Carters Story

Its taken me 4 and a half years to really grasp all of this. I always wanted to seem strong, ok, immortal. Its been told that God does not give you anything you can't handle. I've had a lot of one on one internal conversations and sometimes feel like there just isn't an answer. I was not "young" when Andy and I married. Lord knows when you hit 30 there is a flashing light that goes off when you go into the OB GYN office that screams...halt...rotten eggs...warning warning! I find it interesting that we spend so much time early on trying not to get preggers and then when you want to its planned, positioned :), prayed for and then it still does not happen or there are complications. What is up with that???????

Past the I do's, we never tried not to get pregnant. Granted a few year long deployments caused some complications, something's the USPS probably does not want to ship, we got pregnant. A few times. Actually 4. Each time ,always with a bad outcome. Sorry International (actually not:) but it seemed like Chitown was our lucky town. Ironic. It did give me the biggest title of all, Mom. My prince!

When we found out we were expecting again, honestly I just took it as great, here we go again. We did all the genetic testing, we prayed, we hoped and every time we went in they did an ultrasound. I was high risk so it just was the process. I got use to the tech walking out and the doctor walking back in with the "I'm sorry" look. We had been told I may never carry.

I went through a breast cancer scare in 2004, I was not 20, we had already had multiple losses. This was before my heart attack and stent placement. Stress and genetics. I am a faulty vessel.  

As the weeks passed, we just continued to pray and hope. My first scare was Halloween 2008. I went to NNMC because I felt pressure. I did not look pregnant at all and the ER doc thought I was crazy but after verification he was like well you are pregnant, no kidding, but I'm sure your just over sensitive. This coming from Doggie Houser.  So we pushed forward. We received a call on the way to PA for Thanksgiving that it was a boy (amniotic fluid from genetic testing. My niece has vcad). It looked promising.

We went back to PA for Christmas and New Years. At this point I was 21 weeks (ish). I am a stress person and just was. Driving back to Maryland, again, I just felt to pressure. We went to National Naval Medical Center upon arrival. I remember sitting there. Nervous. They took me back and I was dilated. I was not allowed to get up from the bed. At that point life changed forever.

I sat there, or laid in my new upside down elevated position on Magnesium and meds for Carters lungs just panicked. I was alone. Andy was there but in and out and I was just scared out of my mind.

First came the Grimm reapers, the neonatologist, who tell you nothing but every bad acronym, how your child will never survive, how you should have a c-section because he's not viable and by the way, please sign this DNR. Really....NO.

Its so easy in the med field to just see a patient and not see a name. There was a heart beat. I would lay there for as long as I needed. At this point my head was in dreadlocks because, of course, I was allergic to the magnesium and I was scratching so much.

I was there for a few days and for whatever reason, still unknown, they took us off the monitor. Andy went home to take the pups out. I was looking for him in my drugged state and went to try to find him on the pull out bed next to mine and laid down. The nurse woke me up and Andy had just come back. It was that point that it all just changed. Something was wrong.

Besides the immense pain, what I remember is the doctor telling me not to push and you better tell them to run. Them being the neonatologist. We didn't sign the DNR and said to them if he comes out fighting, fight for him. Carter arrived at 3:18am weighing 1 lb 6 oz and 12 inches on January 2, 2009. 23 weeks and when they were intubating him, he pinched them. My fighter.

I love my husband and people do the best they can do but it was a lonely time. I just missed my parents but thank goodness for the family I do have.

Carter spent 165 days in the NICU. I was there everyday. Many times we were told he wont make it through the night, especially after his heart surgery. Three particular times were just horrible 48 hours.

I always told him, you fight for me I will ALWAYS FIGHT FOR YOU. We sang way to much to him LOL and yes a Steeler dressed SMURF was always at his bedside.

We were told Carter would be non responsive, blind, on a trach and basically in a vegetative state for his whole life.

Carter had heart surgery, ROP surgery, a nissen, Gtube placement, laryngeal clef repair, chronic lung disease, cerebral palsy, hydrocephalus and is legally blind.

Today he breathes room air, can see with ever so cute glasses, does not have a shunt, is eating food, walks with a walker like a mad man and just said Momma.
MOMMA

My heart took a toll and gained so much in the process. He is my heart beat.


Miracles happen

YOU'RE THE CURE!

Building healthier lives, free of heart disease and stroke, is up to all of us. That's why I just took action on an important advocacy alert from You're the Cure, the American Heart Association's grassroots community. Will you add your voice to the fight against our nation's No. 1 and No. 4 killers too? Thanks

Log onto: www.yourethecure.org

www.heart.org

Take action and lets save lives!

So blessed to be able to advocate for such an amazing cause!

International 2013

Well I have finally arrived home and unpacked. It was an amazing 7 year journey which has come with a lot of emotions over the years. Yes, I have carried a baby and baby weight, hey it is a Mrs pageant and also been a nice size zero on other years. Its been a journey. I have learned a lot of lessons. First and foremost, never post on VOY or sign your name even when just defending yourself. I new when a judge said to me that she was not going to ask me anything about my platform because she was going to assume it was true and proceeded to ask me what movie we watched, well if there was a mulligan in pageantry, that was it. You do put your self out there to be judged so the blame I will own. I did compete against two of the judges previously so their opinions were already established. Regardless, I had an amazing time and met so many new friends. You can't control 5 people you can only control yourself. I did my best and I would do it all over again minus my rants. Yep, I will own that too. I just stand up for what I believe in and who I believe in. I have been accused of just about everything from running Voy myself to faking a heart attack to win. Really, this is true and very sad. With all of that being said, I truly can't say that the outcome would have been any different with different judges or that anyone that placed did not deserve their placement. They did. There were 70 plus of us and each lady was so impressive, beautiful, platform driven and fit. I pretty much called Amy to win but only because I know her and she is the package. Photogenic I will never be nor will I be the fitness winner and well she won every preliminary. She is also extremely well spoken. I am ok with the outcome. The International system is one that will always be a part of my heart and their queens do amazing things. The staff make it even more special!

I am moving forward and looking up. Your destiny is determined by your actions and reactions. Moving forward with happy but boy I wish I could rewind the last 8 mos.

Congrats to all of the ladies. International Love should be a song for the production crew in the future. Truly and forever.

Lawyers Have Heart

I was so honored to have been asked to sing the National Anthem last weekend in Georgetown. Their were roughly 10K participants so was I shaking, YES! I remembered the words, thank goodness but at 6:55 am, I am not sure they would book me for the Super bowl just yet.

I had such a great morning with Shannon Obrien, Miss Maryland International 2013, as we cheered on those that took on such a great challenge for a great cause. Lindsey Difaszio with AHA did a great job with the event.

Forever blessed!

D

CPR Training and a fun day with the American Heart Association! Come join us!

American Heart Association and Partners Want To Teach You How to Save Lives with CPR
(Washington, DC) — Got a minute? Then you can learn how to help save someone’s life.  During National CPR Week, the American Heart Association, DC Fire and EMS, All Heart Training, and WASH-FM  with support from DC City Council will hold a press conference and a free hands-only CPR training  to raise awareness about the critical importance of learning CPR.
Each participant in the training will receive a Family & Friends® CPR Anytime® Personal Learning Program that allows anyone to learn the core skills of CPR in just 20 minutes using their own personal kit. The kit contains everything needed to learn basic CPR, AED skills and choking relief anywhere, from the comfort of your home to a large group setting.  The American Heart Association is also seeking people to join our CPR Dance!

WASH-FM personalities Loo Katz and Chilli Amar will be on hand to emcee the event.
What: DC CPR Training Day and Press Conference
When: Thursday, June 6
Where: Freedom Plaza, Washington DC 20004

Agenda:
Freedom Plaza CPR Training
11:00am: Registration-Receive Kit – participants in the FREE CPR training must sign up for the Family & Friends® CPR Anytime® kits either onsite or through Evenbrite at: http://flashmobcprdc.eventbrite.com
11:45am: First CPR Training Session  with DC Fire and EMS
12:15pm: Surprise Entertainment - Know disco? You can save a life if you do. Get down to the song “Stayin’ Alive” and learn how to save a life! Preregister at: http://flashmobcprdc.eventbrite.com
12:30pm: Second CPR Training Session with DC Fire and EMS
1:00pm: Event end

Why: Cardiac arrests are more common than you think, and they can happen to anyone at any time.  Nearly 300,000 out-of-hospital sudden cardiac arrests occur annually, and 80 percent of cardiac arrests occur at home.
·         Many victims appear healthy with no known heart disease or other risk factors.
·         Sudden cardiac arrest is not the same as a heart attack.
·         Sudden cardiac arrest occurs when electrical impulses in the heart become rapid or chaotic, which causes the heart to suddenly stop beating.
·         A heart attack occurs when the blood supply to part of the heart muscle is blocked. A heart attack may cause cardiac arrest.

Know disco? You can save a life if you do. If you see a teen or adult collapse, call 9-1-1 and push hard and fast in the center of the chest to the beat of the classic disco song “Stayin’ Alive.”

The American Heart Association is urging people to take 60 seconds to watch a Hands-Only CPR instructional video so they are equipped to act in a cardiac emergency. The video, which can be viewed at www.andsonlycpr.org  teaches the simple steps to help an adult who is in cardiac arrest. In fact, a recent study shows that just watching a short instructional CPR video greatly increases the chances that bystanders will attempt CPR.

Taking the time to watch the video is important because 70 percent of Americans have never been trained in CPR or their training has significantly lapsed. And when people lack confidence and knowledge of CPR, the odds of survival get worse for victims of cardiac arrest: Less than one-third of those victims get CPR from bystanders.

Hands-Only CPR involves two simple steps: 1. Call 9-1-1 and 2. Push hard and fast on the center of the chest until professional help arrives. The American Heart Association has endorsed Hands-Only CPR as a treatment for adult cardiac arrest victims since 2008, and studies have shown it is as effective as CPR with breaths. In addition, people who watch a brief Hands-Only CPR training video are significantly more likely to attempt CPR, according to a recent study published in the association’s scientific journal Circulation.

Hands-Only CPR is recommended for adults who suffer a cardiac arrest at home, at work or in another public location. Children under eight years old still need full CPR with chest compressions and breaths since the cause of their cardiac arrest is typically respiratory-related. For more information about CPR Week or Hands-Only CPR, visit www.handsonlycpr.org.
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About the American Heart Association
The American Heart Association is devoted to saving people from heart disease and stroke – America’s No. 1 and No. 3 killers. We team with millions of volunteers to fund innovative research, fight for stronger public health policies, and provide lifesaving tools and information to prevent and treat these diseases. The Dallas-based association is the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke. To learn more or join us, call 1-800-AHA-USA1 or any of our offices around the country, or visit heart.org.

American Heart Associations Golf event and 1st annual Women's symposium

Monday was a fun and rainy day! I really enjoyed spending the day at the Woodmont Country Club on behalf of the American Heart Association. It started early but the champion golfers did to let the mist of Mother Nature stop them from golfing for a great cause! I have been involved with this event for a few years but the big change was the 1st annual Women's symposium that was held in conjunction. ( we got to stay dry:).

There were many sessions on cooking, Zumba (done by the amazing Debi Bevins), nutrition, CPR and so much more. We were then treated to a heart healthy lunch. I have to admit, I am not a "foodie" but the raspberry sherbet was gone when I left:). Hey it is heart healthy! Michelle A Albert, MD, MPH, Professor and Chief of Cardiology at Howard University, gave an great lecture on the effects of stress and heart health. I definately paid attention!

We also heard an amazing testimonial from a fellow survivor, Andrea Woogsam.

What a great day for a great cause.

Here's to your heart!

Thank you Joe Finch. What a nice surprise and honor to know you!

Good morning Deanna

Just so you know, I sent n e-mail with a photo to a long time friend at the 25th Infantry Division association bragging about how you help the troops and have put up with Andy's 10 deployments;

He was impressed and ASKED the editors to publish the photo and my e-mail in the Tropic Lightning Division quarterly magazine "Flashes"

There were two articles in that issue of Flashes discussing the extended tour requirements endured by modern 25th ID soldiers and the difficult conditions they face in AFG

They published it and are impressed with what you do.

Here is the article and photo as it appears on page 11 of the current edition of "Flashes" .

I hope you are OK with me noting your help with the troops and that you have CDs out too.

Joe =:)

Wanted to share:

Lobby Day

What an amazing day on the hill! I had the honor of meeting with the offices of Sen Ben Cardin, Sen Barbara Mikulski, Rep Chrisopher Van Hollen (who gave an amazing speech the previous day at the rally) and Rep Donna Edwards. They were all very engaged and open to the work that the American Heart Association and the American Stroke Association does and the importance of the funding for the NIH and the Million Hearts initiatiative.

Rep Christopher Van Hollen (MD) , Allison Davis, Kurt Wenzing, Jennifer Witten and myself

Rally for Medical Research and the NIH~ Lobby DAY 1

I have been volunteering, then working and advocating for the American Heart and Stroke Association for 11 years. My journey started as my Dad's, then my Mom's, my son's, then mine. Today it became so much more.

Today it started with a Rally on the Hill for the National Institute of Health to garner funds. There has been a lot that has impacted the NIH but the sequester has had a huge impact on the jobs and the US economy. The NIH has been greatly effected. So lets make a change.

I am heart patient, advocate and survivor but the the NIH does so much for so many. Cancer, diabetes,St Judes, HIV....all have been impacted and changed by the research and development of the NIH. Change is only made by the vision of those that wish to see what can't be seen yet.

I started out the day with Susan Day, a nurse from Kansas who just touched me with her spirit and kindness. I the spent the day with Christina Wooley, Mrs Oregon International 2013.  What a true spirit and beauty inside and out. She advocates for her Nana and traveled from Oregon to do so.
The Rally was amazing and inspiring. Cokie Roberts was the emcee and Myney Terney was a speaker and she spoke about Speak Up to Cancer.

Out of everything today and us preparing to speak to congress this is what spoke to me most...

This morning after presentations and the Nancy Brown spoke, AHA CEO (a hero to me), questions comments were welcome. One of the constituents stood up to share why she was there. She lost her son two years ago as a toddler as she helped to pass the pulse ox act in WV.

Clarity.

This is why I am here. My heart broke. She and her son. True heroes.

Pulse Oximetry – Congenital Heart Defects Screening for Newborns

As the number one killer of infants with birth defects, congenital heart defects take a significant toll on families across the country. Fortunately there is non-invasive screening test that helps identify newborns at risk for heart defects and potentially save their lives. The test, pulse oximetry, or pulse ox, consists of sensors placed on a baby's hand and foot to check blood oxygen levels. If their levels are too low, additional tests may be conducted that aid in detecting critical or possibly life-threatening heart defects that might otherwise go undetected. New research suggests wider use of pulse ox screening would help identify more than 90 percent of heart defects.

In September 2011, U.S. Secretary of Health and Human Services Kathleen Sebelius suggested that critical congenital heart defects screening be added to the “Recommended Uniform Screening Panel” for newborns before they are released from a hospital or birthing facility. To achieve this goal efforts are underway across the country to enact pulse ox screening policies that will allow babies with heart defects to live longer and fuller lives. As a result of these efforts New Jersey, Maryland, Indiana, Tennessee and West Virginia have already passed laws requiring newborns to have pulse ox screenings prior to being discharged from the hospital. In New Jersey, just hours after their law took effect, a newborn’s life was saved.

The American Heart Association will continue its efforts to educate key decision makers and the public about the critical role pulse ox screening plays in improving early diagnosis for newborns. We will also work to increase funding for support and educational services, enhance scientific research in this area, and expand access to quality care for the nation’s children.

To learn more about congenital heart defects and pulse ox screening policies in your state, visit You’re the Cure today!

Please join me at the Go Red for Women Luncheon!

Make It Your Mission to Fight Heart Disease in Women

Go Red For Women® celebrates the energy, passion and power we have as women to band together to wipe out heart disease and stroke.

Heart disease is still the No. 1 killer of women, taking the life of 1 in 3 women each year. This means women just like you - mothers, sisters, friends - are dying at the rate of one per minute because they don't know what you know: heart disease kills.
Women have come together here in the fight against heart disease in women. Take your seat at the table with dedicated women and men just like you. Hear their survivor stories, learn how heart disease affects a family and how you can help stop heart disease in our lifetime. Share our mission to fight the No. 1 killer of women.
Make It Your Mission to fight heart disease in women. By sharing this commitment, together we can help save lives. Be a part of this extraordinary day.

Make It Your Mission. 2nd Annual Baltimore Go Red For Women Luncheon Friday, May 31, 2013 Event Co-Chairs: Patty Brown & Marianne Fishle

 

I just read a great article on AHA's You're The Cure website: Be Part of the Rally for Medical Research!

I am so excited to be apart of this amazing event in April 8&9th!

I just read a great article on AHA's You're The Cure website: Be Part of the Rally for Medical Research!

There’s something big about to happen in Washington, DC, that you need to be a part of! On April 8th, thousands of patients and researchers, including hundreds of our You’re the Cure advocates, will join together in our nation’s capital to deliver a strong, unified message to Congress that our nation’s investment in medical research must be prioritized. It’s called the Rally for Medical Research- and just because you’re not in DC, doesn’t mean you can’t be there with us! Here are a few easy ways to get involved:

1. Add your name to our ‘Many Hearts, One Voice for Medical Research’ petition today. Your fellow advocates attending the rally will carry big hearts proudly displaying the names of supporters from across the country, like you, who want our nation’s decision makers to get the message loud and clear: We need cures, not cuts!
2. Help us get the word out! The more names we have on our hearts, the bigger the presence of the heart and stroke community will be at the rally, so encourage your friends and family to sign the petition too. Post the link (http://yourethecure.org/heartsforresearch) to Facebook and Twitter today.
3. Watch the rally from your home computer! On April 8th at 11:00 am EST, the rally will be live-streaming on YouTube, so tune-in to hear from great speakers, including NIH Director Dr. Francis Collins and even a couple of our very own You're the Cure advocates about how critical medical research is. You'll also get to see our red hearts waving in the crowd! Watch here.

Medical research saves lives, inspires hope, fosters innovation, and boosts the economy. Yet, our country’s investment in the National Institutes of Health (NIH), the world’s leading research institution, continues to decline. This threatens the fight against heart disease and stroke, our nation’s No. 1 and No. 4 killers- and the jobs of the researchers who have dedicated their careers to advancing science that saves lives. It’s time to turn things around- and this rally makes an important statement to Congress. Thank you for joining with us to show your support for making medical research funding a national priority!

A Mom to me

I have been asked many times why and how I got involved in pageants. They get a bad rap, truly but they saved me at a time I really needed saving. I came back from AADA/UF and by some grace was hired full time as as a model on HSN (then HSC ) as a model. It was an amazing letter. Someone who never met me believed or saw something in me. She encouraged me to compete in Miss Seminole Florida MAO. Who did not want to be Miss America. I just never knew how. I was a bit lost for many reasons and it gave me focus so I tried. Oh...geez....my theatrical background and my lack of tan...well.....what it did give me was family. Needless to say, I did not win that year. What I did gain was an amazing Mother.


I won Miss Seminole a few years later and Denny and Judy Pieczonka took me in to their home as their daughter and loved me through Miss Florida and beyond.


Today is my "Mom" Judy's Birthday and I love you. Thank you for always loving me, believing in me, and your amazing applesauce. You and Denny are forever in my heart and parents to me. I hope I didn't cause you to much trouble! Happy Anniversary's you two also.Love you!

HAPPY HAPPY BIRTHDAY!!!!!!!!!!!!!!!! JUDY PIECZONCKA!

You say its you BIRTHDAY!

I think self celebrating may be wrong in a few books but in mine, I'm good with it. Its rough being 29....again:) I am happy to tell you my husband turned 38 this week. My age,  mystery! Maybe not so much! LOL! Its an interesting birthday with the birth of so much new and the passing and letting go of what is old. The military will do that to you. I had someone once tell me I wear everything on my sleeve, yeah baby, I wear it well!

Still looking for my Shamrock? Insert winning lottery ticket here! Excited for April. May the Cherry Blossoms bloom...finally!

Spring, where are you?

The car, the safe and the legacy.

In the past few days, well weeks, I have been digging through our safes. There is not a lot of importance or of value but there are a lot of memories. What drove me, no pun intended was we gave my nephew one of our cars and I was looking for the title and I came across some great letters. I am a Pemberton and proud of it. Hey by legacy we did invent Coca Cola but more importantly I ran across a letter from my Grandmother Bonnie. My Grandpa, Floyd J Pemberton, received a medal from President Eisenhower and my Dad was in the picture. This was followed up by a letter from my Grandmother of an article that was published in 1955 by the American Magazine  title "I'm Glad I'm Alive".  My intent is to find a scanner this week and post it because it just made me smile. Its not what you think. It was a how to avoid a car accident in a major rig. You see the award he won was for pulling two women out of a burning car when he was driving one night.

I think I search a lot for my family and I miss my parents, no doubt. Their legacy's live on. My Mom its a little harder because of the adoption and questions but we know there was music, go figure :), but the Pemberton's, well we are a very strong breed.

Family is amazing, my family is amazing.

YOU'RE THE CURE!

On April 8th, thousands of survivors and researchers, including hundreds of You're the Cure advocates, will be in Washington, DC for the Rally for Medical Research to deliver a strong, unified message to Congress that we must prioritize of nation's investment in medical research. You can show your support and be there with us by adding your name to our "Many Hearts, One Voice" petition today! Every name added will be proudly displayed on hearts your fellow advocates will hold at the rally.  

True Heroes

About 10 years ago, I was introduced to a wonderful man, Joe Finch.  Little did I know, he and the  journey would change my life.  The Armed Forces Foundation has done so much for so many. Joe and Monika, well so much more.

About 6 years ago Andy and I were so honored and blessed to have met Josh Huffman and Heather in Virginia and through the many arms of the AFF...Homes for the Troops...Andy and I were honored to emcee the event in Michigan that helped provide an amazing home for him. Josh and Heather are great heroes. It in moments that reminds me of the importance when it so easy to get  lost in the the day of  just "me". I received a great update today! Josh is doing great and I just bet there are some amazing things ahead. Save a hug for me!

I was so happy, honored and blessed to have been asked back to help serve at Walter Reed for the monthly dinner the Armed Forces Foundation host. We are asked not to take pictures of the patients but I will tell you they are the TRUE TRUE TRUE heroes, inspirations..... What people don't see is the day, the every day, The families, the every day. The staff, the every day. When you are in patient day after day, the beeps, the smells, the staff, the noise it becomes your life. It becomes your family of sorts. So even when the initial "war" has passed and the "healing" has begun its the journey that is is the hardest.

A special thank you and someone who walks the walk to Hannah Brewer Dell. Miss Maryland Teen USA. Whether the AHA, USO, or AFF your arms always reach that far. Love you.


From the smallest heroes to the biggest souls may God find speed tonight.

Thank you to the Armed Forces Foundation and thank you to "Uncle" Joe and Monika Finch and so many more that give. I am honored to have been volunteering with you for so long, blessed to be part of the military community and a big thank you for all you do.

Heart disease and women

DALLAS, February 19, 2013 — A new study shows women’s heart disease awareness is increasing, with the number of women aware that heart disease is the leading cause of death nearly doubling in the last 15 years, but that this knowledge still lags in minorities and younger women, according to the American Heart Association (AHA).
Among the study’s major findings, researchers comparing women’s views about heart disease in 1997 and today found:

• In 2012, 56 percent of women identified heart disease as the leading cause of death compared with 30 percent in 1997.
• In 1997, women were more likely to cite cancer than heart disease as the leading killer (35 percent versus 30 percent); but in 2012, only 24 percent cited cancer.
• In 2012, 36 percent of black women and 34 percent of Hispanic women identified heart disease as the top killer — awareness levels that white women had in 1997 (33 percent).
• Women 25-34 years old had the lowest awareness rate of any age group at 44 percent.

Among the women surveyed in 2012, researchers found:

• Racial and ethnic minorities reported higher levels of trust in their healthcare providers compared with whites, and were also more likely to act on the information provided—dispelling the myth that mistrust of providers contributes to disparities.
• Compared with older women, younger women were more likely to report not discussing heart disease risk with their doctors (6 percent among those 25-34 versus 33 percent for those 65 and older).

About the Study

In 1997, the AHA commissioned a national survey to assess the awareness and knowledge of heart disease risk among women. Researchers then determined that only one in three women correctly identified heart disease as the number one killer of women. Since that time, the AHA has worked to increase women’s awareness of heart disease, such as by launching the Go Red For Women campaign in 2003. As of 2012, the number of women who know that heart disease is their leading cause of death has nearly doubled.
The study showed barriers and motivators to engage in a heart healthy lifestyle are different for younger women, who also said their doctors were less likely to talk to them about heart disease.
“This is a missed opportunity,” said Lori Mosca, M.D, M.P.H., Ph.D., lead author of the study. “Habits established in younger women can have lifelong rewards. We need to speak to the new generation, and help them understand that living heart healthy is going to help them feel better, not just help them live longer. So often the message is focused on how many women are dying from heart disease, but we need to be talking about how women are going to live — and live healthier.”
Mosca also said efforts need to be culturally sensitive to reach more minorities who are at high risk for heart disease.
Learn Go Red For Women’s expert tips to live healthy and more ways to prevent heart disease. Know your risk for heart disease and take the Heart Checkup on Go Red For Women.
Find out more about how you can get involved with Go Red to help us bring awareness to women’s number one threat.
Read more about the American Heart Association’s study at Heart.org.

Im going to love you through it

I do believe that God has a plan and people walk into our doors for a reason. The realization of how true this is is just remarkable. I was listening to Martina McBride's song, "Im gonna love you through it" and it reminded me of the blessings in my life. It also reminded me of Footprints in the Sand.

Day by day, like we all do I walk a path and only hope that it is right. I make mistakes, I am human but also know that no matter what, God does not judge but he does love if you are only open to being loved.

Anyone who truly knows me, knows that there is a song for everything, every moment and every minute. As I start to get my head around things, the one thing I know for sure, the love of friends, family and faith will guide me through.

Last week was a bit bumpy and I also had a slight accident. My fault, tire issue and well we are all ok.

I am blessed and remain blessed.....so for my heart and at time's messed up head :) I will always love you through it because I am never alone and nor should you be.

Remain blessed and here's to your heart.....

Up next Illinois Intl and Walter Reed Dinner.

D

A Valentine gift for me...serving those who serve

 

With 1st Sergeant Christopher C Howlett and LT Col Chaz M Holland, Jr

 

I have been volunteering with the non profit group Armed Forces Foundation for 6 years. They are an amazing group that does so much for so many. I was first introduced to them by Joe & Monika Finch who give so much to those who are serving or who have served in the United States Military Services and their families. As a military spouse who has lived in MANY locations, it is the families and organization's that always make you feel like you have support and you are never alone



I was also presented with a challenge coin!

Thank you to WRNMC and Lt Col Holland!












I was invited to help serve Valentines Dinner at the Walter Reed National Medical Center and it was a true honor! Panera Bread donated the food and by the end of the night...all the food was gone! Desert was donated as well by Cake Love and looked amazing! He has even been featured on Oprah so that was a huge hit!!!!

I invited Hannah Brewer Dell, Miss Maryland Teen USA 2013, to join us and boy did she bring on the smiles!!!! Thank you Hannah. Did I mention that I believe she will be our next Miss Teen USA? I have had the privilege of seeing her involvement with the American Heart Association also and I can say for a fact that she not only beautiful on the inside but the outside too. I also was able to spend some time with Darlene Deeban whom I love dearly. She is a former Mrs Galaxy and just a beautiful soul! Her son was also there helping out.

I know some people call Valentines Day a Hallmark created event but actually its so much more. To love, be loved and create a smile....in my opinion Valentine's Day should be every day. Also, I have to admit, I am a sucker for a big red heart:)

Here's to your heart~

Deanna

Zumba for Your HEART!

One of the most important things you can do for your heart is exercise so of course I was excited to have been invited to speak at Zumba for Heart Health~Wear Red Day Event. Thank you so much to Debi Bevins and Victorine Clarke for including me!!!!!

 Yes, they even let me wear a zumba scarf. Great fun, a great workout for a great cause!

Here's to your heart!

D

It has been a busy few days as heart month is in full gear!!!!! Friday night, I attended Crystal Couture in Crystal City on behalf of the American Heart Association and Go Red for Women. I had the pleasure of finally personally meeting Andrea Simba Wongsam, a fellow survivor who's story is truly amazing.

I had the pleasure of co-hosting this event in the past which is full of fashion, bling and the best crowd. I encourage you to check out www.crystalcity.org! I love Crystal City!

Thank you to Roxy, Senayt, Jessica, Andrea and Steve for making the night such a great one!

Always remember to GO RED! www.goredforwomen.org

Heres to your heart....D

Did I really make the Ravens win? So not! :)))

The heart never trumps history, you have a choice to make it. Thats all of our choices.

I was watching the Superbowl and wow what a game and I was conflicted. I am an East Coast girl but Steve Young , a former Buc and 49r...well conflicted. Throw in the blind side and you got me!

I love a good game, a little history and a little belief

I am so looking forward to this week, a zumpa thone, crystal couture, Macys and a great week with my Father in law who gets to stay with me while my Mother in law is doing a girls cruise.....

Life is good, life is short (wow that sounds sad) but I hope you join me soon!

Walter Reed is also coming up on the 14th! Please thank a soldier and their family!

With heart

D

Heart Month and life as we know it

Sometimes its hard for me to believe that life is what it is. I mean, we all go through a lot "our journey" if you will but you can't help but ask why sometimes. I say that not as a pity party but why? Was or is there a lesson for me, what is my take away? I have said this over the years because yes I miss my parents everyday and they died far too young. Genetics, I got both sides and because my Mom was adopted, some things will always remain unclear.

So two years ago January, I had a heart attack and stent placed due to a 70% blockage in my left anterior descending artery. Also called the "widow maker".  True to the tradition of January, a few weeks ago, 2009 my Carter love was born 4 months early and spent the next 6 months in the intensive care unit, I had a stroke and seizure. What started what, I am not sure but because of great friends that I was on the phone with, probably helped to save my life. They have become part of my family so thank you Juliana, Walt, Jules, Caroline and Mac for finding your way in my life. I feel so blessed and minus my new front door, gotta love a friend who will do whatever it takes, I am ok. I was given TPA and spent a few days in the ICU but I am ok. My left side, still not up to par but I have always walked with a limp anyway. Gives me character and a further reason to sport my 5 inch heels. Believe it or not, the heels off set the limp and my husband and I always kind of chuckle that this is my excuse..

Tomorrow heart month begins. Obviously for me, its very personal. Honestly, if it weren't for my work with the American Heart Association and knowing my numbers and history, I am not sure where or if I would be here today. Dramatic, probably, but laying in the ICU and just thinking about my life, twice now, it does aid in some clarity.

I have a beautiful son, a husband serving in Afghanistan, a family who flew in and drove in to take care of me, friends (AJ,Jules, Bethany) and those who respected my privacy and so much to live for. If sharing my story can help to bring the reality that life is short and trust in your body, your heart, your mind and your gut...then it matters.

I will never forget the two worse days of my life. One was when I took a breathe after my Dads valve replacement outside the hospital, sitting in the bench thinking everything would be ok and receiving the call from Lois that my Mom had been found deceased after surgery at the house. I can't remember where I parked on most days but those days I will never forget and can even tell you what I was wearing.

As my days move forward, I pray that I am never someones worse day. It IS important to know your numbers, take care and make healthy choices but most of all LISTEN TO YOUR HEART and head.

Thank you again to Adventist Health care, my family , friends and God....yes, faith carries me everyday.

Here's to your heart...Deanna

Twas the Day before the Night before Christmas

I woke up this morning in what I would call my seasonal funk. The skies were grey, the news was grey, memories of my parents who passed, grey, my husbands deployment, grey. I cried myself to sleep last night. I was grey. As a parent of a special needs child sometimes even when things aren't personal,they are personal because it hits so close to home and my heart breaks for them. Just grey. Seriously, Christmas can be a tough time of year especially when your are surrounded by the Hallmark Channel and LMN. I cried at Bambi and the Lion King so, go figure, I cry at many many many holiday films! So I sat back and thought, Andy always tells me when I am not feeling well (or Grey), get out and walk and drink a lot of water. This comes from his wrestling days but it does work! He went to West Point and wrestled for them and before each match he would walk and drink a lot of water and so I did.

Carter and I walked and walked. I went for a last minute grocery store stop for my Christmas dinner and I went to Starbucks. Gotta love a Starbucks. No, I did not buy the $400 gift card but what to my wonder eyes did appear but a GIANT Snowman cookie that was shedding no tears. So I bought it, ok two of them. At 390 calories a piece, that is my Christmas Day meal and although not "heart healthy", oh so good for the heart.

After Starbucks, we continued to walk. I found myself saying Merry Christmas to what is probably a 90% Jewish Orthodox community and was greeted by so many smiles and returns. After all, who does not love a good Hannukah bush;)

As Carter and I strolled back to the house with the cookies, my ice coffee and groceries in tow...its started to snow. Our first in DC for the season and I smiled and Carter laughed. What Christmas lights that were lit you could see in the daylight and I felt like I was in a greeting card.

My phone started to ring and I looked down and it was Skype. It was Andy. 1000 miles away, literally and he was walking with us.

So on the day before the night before Christmas, the grey turned to light and Santa does exist. As Andy said to me, we have us, we have our furry family, we have our little man and we have 55 plus more years together.

I am so blessed

The Heart Truth

Life and heart health

I questioned posting about this because I am always concerned about how I may look. Too desperate,  too sad, too sick when in fact I am none of the above. What I am is a normal women who has had normal issues.  I use the word normal loosely. To clarify, I am not special and these problems happen every day to women ( and men) everywhere. I have had many fertility issues, heart issues, shingles and most recently the confirmation that at a moment in April when I just thought I was too stressed, my brain MRI shows "markers" that I indeed had a stroke....again.

After April, I re-evaluated my life. I lost what I thought were friends who were at the hospital on that day because frankly people don't like sick and they certainly don't like an emotional break down. I was so scared and all I could think of was my son and husband. I was blessed that after some time I regained all my functionality and just went straight into nut case mode. I was so dedicated to my obligations in life that I showed back up in the very same ER dressed as Heart Man because that was my job and I had to be there. This after leaving AMA just 9 hours earlier. Yes, there was probably a different room I should have been in. What can I say, I have always been committed...ok ok, maybe at time I should have been committed!

I am petrified of hospitals because my parents never left  so I will give myself a little slack. Carter also spent 165 days plus plus plus in moments of question. So a good patient I am not. Just ask my PCM who gladly told my husband prior to deployment that I am not. It took me 7 mos to follow up on April but like many I just figured if I was functioning and they had not called me, I was fine.


The reason why I am writing this is because I advocate for heart health and yet I have not been great with follow up. Its scary but I do know my numbers:)

I made the choice when my husband was confirmed that he was was being deployed to leave the American Heart Association as an EMPLOYEE to focus on my son and to get back to what volunteering does, it allows you to advocate. In development, like any company, you need to make your quota but for me, heart is about heart.

I am blessed and honored to work for, advocate for and be an ambassador for the AHA. 90% of all funds that are raised for the Heart Walk go back into the mission. There are not many non profits that can say that. Its been 11 years for me.

I made some unwise choices this year as far as my health but it also makes me understand why people do what they do. I am so blessed that Adventist Health care, Dr Chen, Walter Reed and of course my husband all had my back and my heart:)

As 2013 approaches, I will heed my own advice and listen to my heart...and head.

The Season of Giving

I can talk a lot, I am filled with emotions and one of my favorite things to do and be involved with is ANYTHING to do with children. If you look at the heart beat of most nonprofits, you will find a strong arm in the future. The future is our children. The American Heart Association, USO, Children of Fallen Soldiers Reelief Fund, St Jude, Mental Health Initiatives, CASA and so many more. This is why I am just at such a loss on the tragedies that have been happening in our society. It seems like no place is off limits whether its the mall, movie theatre or the unimaginable such as yesterday in Conneticut....a school. This is the season of giving. It is the season of faith. It is the season of miracles. Most of all, it is the season for children. I don't understand and will never understand the mind of the insane. How can you hurt anyone, especially a child. I am a Mom and my son is my heart beat. I can't imagine the hurt that is running through so many parents hearts right now.

I found this is wanted to share. Thank you to the Middletown Press

Newtown Youth & Family Services to collect donations for families affected by elementary school shooting

Published: Saturday, December 15, 2012

 

By Viktoria Sundqvist
The Middletown Press

For those wishing to help Newtown residents directly affected by Friday’s elementary school shooting, the Newtown Youth & Family Services is collecting donations.

Donations can be sent via “Caroline’s Gift,” a fund set up in the 1990s by a local family in memory of their daughter. The Caroline’s Gift fund offers financial support to families who are dealing with a child’s terminal or catastrophic illness.

“Any donations made to Newtown Youth& Family Services will be donated directly to those affected by the Sandy Hook Elementary School Shooting,” a message on the organizations website says.

Newtown Youth and Family Services is located at 15 Berkshire Road, Sandy Hook, CT 06482. For more details on how to donate, call (203) 426-8103 begin_of_the_skype_highlighting (203) 426-8103 FREE end_of_the_skype_highlighting .

Another group accepting donations is the Newtown Parent Connection, which accepts donations right on its website, www.newtownparentconnection.org. Donations can be made via Paypal or any major credit card, and the organization says all donations will be donated directly to those affected by the shooting. For further details, call (203) 270-1600 begin_of_the_skype_highlighting (203) 270-1600 FREE end_of_the_skype_highlighting .

The United Way of Western Connecticut is also accepting donations in a partnership with Newtown Savings Bank. Check donations may be mailed to: Sandy Hook School Support Fund, c/o Newtown Savings Bank, 39 Main St., Newtown CT 06470, or you can drop off a donation at any Newtown Savings Bank branch location. You can also donate by credit card directly online here: https://newtown/uwwesternct.org

“To several staff, volunteers and contributors, Newtown is home,” the United Way of Western Connecticut says on its website. “We will stand with the community and everyone affected directly and indirectly by this tragic event as we face the days and weeks ahead.”

Stuffed animals are also being collected today (Saturday) until 8 p.m. at Macy’s Westfarms for the children at Sandy Hook Elementary School by Kiss 95.7 FM.

“Something to hold onto and hug in the wake of this tragedy,” a Facebook post from the radio station says.

The radio station will also collect stuffed animals for the children on Sunday at Winterfest at Bushnell park in Hartford from 2 to 4 p.m.  

 

The Facebook group R.I.P. Sandy Hook Elementary School Children, which as of Saturday morning had more than 1.1 million likes, is encouraging everyone to wear blue and yellow – the school’s colors – on Monday in honor of the victims.    

 

For those wishing to help Newtown residents directly affected by Friday’s elementary school shooting, the Newtown Youth & Family Services is collecting donations.

Donations can be sent via “Caroline’s Gift,” a fund set up in the 1990s by a local family in memory of their daughter. The Caroline’s Gift fund offers financial support to families who are dealing with a child’s terminal or catastrophic illness.

“Any donations made to Newtown Youth& Family Services will be donated directly to those affected by the Sandy Hook Elementary School Shooting,” a message on the organizations website says.

Newtown Youth and Family Services is located at 15 Berkshire Road, Sandy Hook, CT 06482. For more details on how to donate, call (203) 426-8103 begin_of_the_skype_highlighting (203) 426-8103 FREE end_of_the_skype_highlighting .

Another group accepting donations is the Newtown Parent Connection, which accepts donations right on its website, www.newtownparentconnection.org. Donations can be made via Paypal or any major credit card, and the organization says all donations will be donated directly to those affected by the shooting. For further details, call (203) 270-1600 begin_of_the_skype_highlighting (203) 270-1600 FREE end_of_the_skype_highlighting .

The United Way of Western Connecticut is also accepting donations in a partnership with Newtown Savings Bank. Check donations may be mailed to: Sandy Hook School Support Fund, c/o Newtown Savings Bank, 39 Main St., Newtown CT 06470, or you can drop off a donation at any Newtown Savings Bank branch location. You can also donate by credit card directly online here: https://newtown/uwwesternct.org

“To several staff, volunteers and contributors, Newtown is home,” the United Way of Western Connecticut says on its website. “We will stand with the community and everyone affected directly and indirectly by this tragic event as we face the days and weeks ahead.”

Stuffed animals are also being collected today (Saturday) until 8 p.m. at Macy’s Westfarms for the children at Sandy Hook Elementary School by Kiss 95.7 FM.

“Something to hold onto and hug in the wake of this tragedy,” a Facebook post from the radio station says.

The radio station will also collect stuffed animals for the children on Sunday at Winterfest at Bushnell park in Hartford from 2 to 4 p.m.

The Facebook group R.I.P. Sandy Hook Elementary School Children, which as of Saturday morning had more than 1.1 million likes, is encouraging everyone to wear blue and yellow – the school’s colors – on Monday in honor of the victims.

TEN YEARS OF SAVING LIVES WITH GO RED!

In 2003, the American Heart Association faced a challenge;Cardiovascular disease claimed the lives of nearly 500,000 American women each year, yet women were not paying attention. In fact, many even dismissed it as an “older man's disease.” To dispel these myths of heart disease as the No. 1 killer of women, the American Heart Association, along with the National Heart, Lung and Blood Institute created National Wear Red Day® to raise awareness of this critical issue. Each year, on the first Friday in February, millions of women and men come together to wear red, take action and commit to fighting this deadly disease.
One year later, in 2004, the AHA also created Go Red For Women - a passionate, emotional, social initiative designed to empower women to take charge of their heart health as well as band together and collectively wipe out heart disease. It challenges women to know their risk for heart disease and use the tools that that Go Red For Women provides to take action to reduce their personal risk.
Funds raised by Go Red For Women allow the American Heart Association to help women by offering educational programs, increase women's understanding about their risk for heart disease and support research to discover scientific knowledge about heart health. We turn science into materials and tools that healthcare providers and decision-makers can use to help women. Scientific guidelines on women and healthcare providers receive the most up-to-date strategies and treatments tailored to a woman's individual risk.
Since the first National Wear Red Day 10 years ago, tremendous strides have been made in the fight against heart disease in women, including:

• 21% fewer women dying from heart disease
• 23% more women aware that it's their No. 1 health threat
• Publishing of gender-specific results, established differences in symptoms and responses to medications and women-specific guidelines for prevention and treatment
• Legislation to help end gender disparities

But the fight is far from over as still hundreds of thousands of women still die each year. It's time to stand stronger, speak louder and join us in the fight this National Wear Red Day.
It's time to Go Red. Join us.

I kind of feel like I have lost my words in the last few months. Its something that we as military spouses probably should not feel or say out loud. Here is my story, I am married to an amazing man and I come with baggage. Don't we all:)

I met Andy a month after my Mom passed at 56 and my Dad at 54. Both heart related but lets face it I came with baggage. My Mom always said you will know when you know and although never married before I was engaged. With Andy, it just fit. Maybe it was our Chesney moment or him trying to feed me but Nashville built this house.

In our eight years of marriage we have gone through multiple deployments,a very special child, a not so great vessel (me)but at the end of the day...God gave me you. The most amazing Dad EVER.

I love you Andy and please come back to me and us...I need you. You are the me in we and I am forever your Pineapple and you are forever my Cuddlebug.

Dear Friends and Family,

Little Patriots Embraced www.littlepatriotsembrced.org  has over 6700 military kids to serve this holiday! Up from 2100 last year!!
And we have several families in need of our help!!!

An Example: One of our families is a family of four. He is a Marine who has deployed several times and is home now to care for his wife who is very sick. She is 32 years old and has a disease with no cure. They have two little girls. They have no money due to this battle that they are fighting against this horrible enemy! We want to be there for this family. We have adopted them for all of 2013, beginning with this Thanksgiving! We need YOUR help to serve them and other military families in need!

Here is how You can help us serve these Military Kids, and the families we have adopted over this holiday season:

1. Little Patriots Embraced has partnered with Heartland Banks in St. Louis to gather toys for Military Children. This ends Nov. 30th.
Please see our flyer attached to this message. Drop off your unwrapped new toys at any Heartland Bank no later than Nov. 30th. OR If you are in the St. Louis area consider an office Toy Drive at your office! Call us for pick-up between Nov. 30 –Dec 7th

2.  Make your Donation of $10.00 or more using the link below. This is our campaign page on our web site.
And we have a FACEBOOK Campaign happening now! Go on LIKE LPE’s page and SHARE! Help us get the word out!
JOIN US in our national campaign to MAKE A DIFFERENCE IN THE LIFE OF A MILITARY FAMILY!
Your $10.00 (or more) donation today will change the life of one military child this Christmas. One child’s life will be better this holiday because YOU CARED and SHARED.
Please click on this link to see our new holiday campaign!
http://littlepatriotsembraced.org/holiday-campaign/
3.


Thank you so much for your help this holiday season! Without YOU we couldn’t help these families who have sacrificed so much for us.

www.littlepatriotsembraced.org
Find us on facebook, Little Patriots Embraced

 Little Patriots Embraced is a non-profit organizations who's primary focus is to show support for the immediate family members of military personnel as they face the psychological and emotional stress of deployment. Please visit our website at www.littlepatriotsembraced.org or on Facebook at Little Patriots Embraced.

Veterans Day

I am a very proud military spouse and on this Veterans Day, I think its important to know the history coutesy of winkepedia. God Bless America and all who have served or are serving in the United States Military Services!

 

 

Veterans Day
Joseph Ambrose, an 86-year-old World War I veteran, attends the dedication day parade for the Vietnam Veterans Memorial in 1982, holding the flag that covered the casket of his son, who was killed in the Korean War.
Type	National

Veterans Day is an official United States holiday honoring armed service veterans. It is a federal holiday that is observed on November 11th. It coincides with other holidays such as Armistice Day or Remembrance Day, which are celebrated in other parts of the world and also mark the anniversary of the signing of the Armistice that ended World War I. (Major hostilities of World War I were formally ended at the 11th hour of the 11th day of the 11th month of 1918 with the German signing of the Armistice.)
Veterans Day is not to be confused with Memorial Day; Veterans Day celebrates the service of all U.S. military veterans, while Memorial Day is a day of remembering the men and women who died while serving.^[1]
Most sources spell Veterans as a simple plural without a possessive apostrophe (Veteran's or Veterans').

History

U.S. President Woodrow Wilson first proclaimed Armistice Day for November 11, 1919. In proclaiming the holiday, he said

"To us in America, the reflections of Armistice Day will be filled with solemn pride in the heroism of those who died in the country's service and with gratitude for the victory, both because of the thing from which it has freed us and because of the opportunity it has given America to show her sympathy with peace and justice in the councils of the nations."^[2]

The United States Congress passed a concurrent resolution seven years later on June 4, 1926, requesting that President Calvin Coolidge issue another proclamation to observe November 11 with appropriate ceremonies.^[2] A Congressional Act (52 Stat. 351; 5 U.S. Code, Sec. 87a) approved May 13, 1938, made the 11th of November in each year a legal holiday: "a day to be dedicated to the cause of world peace and to be thereafter celebrated and known as 'Armistice Day'."
In 1945, WWII veteran Raymond Weeks from Birmingham, Alabama, had the idea to expand Armistice Day to celebrate all veterans, not just those who died in World War I. Weeks led a delegation to Gen. Dwight Eisenhower, who supported the idea of National Veterans Day. Weeks led the first national celebration in 1947 in Alabama and annually until his death in 1985. President Reagan honored Weeks at the White House with the Presidential Citizenship Medal in 1982 as the driving force for the national holiday. Elizabeth Dole, who prepared the briefing for President Reagan, determined Weeks as the "Father of Veterans Day."
U.S. Representative Ed Rees from Emporia, Kansas, presented a bill establishing the holiday through Congress. President Dwight Eisenhower, also from Kansas, signed the bill into law on May 26, 1954.^[3]
Congress amended this act on June 1, 1954, replacing "Armistice" with "Veterans," and it has been known as Veterans Day since.^[4][5]
The National Veterans Award, created in 1954, also started in Birmingham. Congressman Rees of Kansas was honored in Alabama as the first recipient of the award for his support offering legislation to make Veterans Day a federal holiday, which marked nine years of effort by Raymond Weeks. Weeks conceived the idea in 1945, petitioned Gen. Eisenhower in 1946, and led the first Veterans Day celebration in 1947 (keeping the official name Armistice Day until Veterans Day was legal in 1954).
Although originally scheduled for celebration on November 11 of every year, starting in 1971 in accordance with the Uniform Monday Holiday Act, Veterans Day was moved to the fourth Monday of October. In 1978, it was moved back to its original celebration on November 11. While the legal holiday remains on November 11, if that date happens to be on a Saturday or Sunday, then organizations that formally observe the holiday will normally be closed on the adjacent Friday or Monday, respectively

Bella

Its so easy in life to be just about me. Me being we and lets face it, at that single moment when your nail is broken there is no fix. We all have stories and we all read like a Danielle Steel novel. I love DS but I would prefer  a good Oprah or Ellen moment. Life is what it is.

When I met my husband 8 years ago I was clearly in a place of me. I was single and yes, had lost my parents but I was career driven. Then God and even before, gave me the not about me family.

I met my husband. He was so different and challenged me in  different way. He didnt understand me but he clearly got me.

I met his family and I am sure in my 5 inch heels and who I am was a bit much but like Lois Lane, I was blessed was some amazing sisters. I was blessed with Carrie and Mic.

Carrie. How do I begin. Clarity. Such a beautiful soul that has 5 children. Bella boo is all so special. Bella has VLCAD.

VLCAD is a recessive gene disorder and one that is rare. Her's is cardiac.

The picture is her rock star Halloween princess photo. Yes, much like my Rocky, she is a rock star.


ghr.nlm.nih.gov/.../very-long-chain-acyl-coa-dehydrogenase-deficie...

Bella is 5

Learn more and help if you can raise awareness. Hopefully. one day we can find a a cure. The reality is that there aren't a lot of statistics of patients after the age of 20. Our reality and my belief is in the reality of who believe because with science being what it is, we can save lives and promote change.