A Heart to Build

$20,035 of $100k goal

Raised by 226 people in 41 months
Shari Robinson  CHESAPEAKE, VA
It is with the heaviest of hearts I must tell you that Noah earned his wings on the afternoon of March 24th. He fought hard and was loved fiercely, but God needed him and we had no choice but to let him go. With tears in our eyes and great sadness in our hearts, we still thank Him for allowing us these five months with Noah. He has changed our lives forever and for that we are eternally grateful. We will love you always sweet boy...

This page will stay live as there are still medical bills coming in and now other expenses to be taken care of now. Adam and Ashley still need our support.




Original Post:
He needs you. My nephew has HLHS (Hypoplastic Left Heart Syndrome) meaning the left ventricle of his heart is, essentially, missing. It's not something that will correct itself or something he'll grow out of. If untreated he won't survive.

We're sad, stressed, shocked, scared, but most of all...hopeful. This WILL be okay. It will all turn out the way it's supposed to, we just have to stay positive and have faith.

You can look up the condition and read about the three-stage surgery that's required and the statistics involved, there is a lot of information readily available. He has a chance. He has a GOOD chance and we are staying positive. There are a number of survivors...the oldest are in their twenties and thirties because the procedure wasn't started until 1985 so we don't know exactly what the future may bring...but who does?

This journey will be long and hard, but we are bracing ourselves for it, which is where you come in...if you choose to. I'm hoping to be able to raise enough money to help them with medical expenses.

So I ask for your help. As much or as little as you can give. Every penny counts.

Thank you for taking the time to read my message and considering a donation. Please pray for my brother and his wife, but most of all my nephew...and help them get through what promises to be a challenging time.

~Shari

P.S. If you are unable to donate, you can still help by sharing this site and/or the Facebook page with anyone and everyone your know. E-mail, Facebook, word of mouth...anything you can do to spread the word and get people to donate is greatly appreciated.
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Update 13
Posted by Shari Robinson
32 months ago
It is with the heaviest of hearts I must tell you that Noah earned his wings on Monday, March 24th at 5:23 p.m. He fought hard and was loved fiercely, but God needed him and we had no choice but to let him go. With tears in our eyes and great sadness in our hearts, we still thank Him for allowing us these five months with Noah. He has changed our lives forever and for that we are eternally grateful. We will love you always sweet boy...

From Adam:
"As some of you may know, Ashley and I lost our Baby Noah last night. He was surrounded by his family and snuggled peacefully in his Mommy and Daddy's arms when he took his final breath. I thank every one of you for your thoughts, prayers and warm wishes as we all fought alongside Noah. He was a strong little guy and he was our little buh bubs. We know he is in a much better place now and free from all his pain and that one day we will see his beautiful smiling face again. I want to thank all of the nurses, doctors, and staff at Children's Hospital of Philadelphia for being so awesome with Noah and for taking care of him day in and day out. Ashley and I are deeply grateful. God please watch over my little guy and take good care of him. I love you Noah, and I always will!"
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Update 12
Posted by Shari Robinson
34 months ago
Noah had a heart transplant! The surgery began Thursday night (1/30) and carried through Friday morning. It was a long night and there were some hiccups along the way, but Noah is holding steady. He even opened his eyes for his daddy Saturday morning.

www.facebook.com/AHeart2Build
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Update 11
Posted by Shari Robinson
34 months ago
Noah needs a heart transplant...

Well, we got the results back from Noah's heart catheterization procedure. The doctors found some narrowing of his aortic arch that they were able to open up using a method known as balloon dilation. They also found that his tricuspid valve is leaking (moderately) and that he does have decreased right ventricular function (thus confirming the recent echocardiograms). However, they then also noted that Noah's pulmonary veins are narrowing, which may be the reason for his fast breathing.

Both Dr. Rome and Dr. Spray expressed to us that they don't think going through with the second staged procedure (The Glenn) is the right step to take for Noah. They feel the combination of the symptoms listed above will not fare well after surgery and, therefore, suggested that the next step would be to have Noah put on the Heart Transplant Recipient List. This has come as a huge shock to both of us, but the doctors think that it's what's right for Noah. The Children's Hospital of Philadelphia has a great track record with heart transplants (>93% survival after one year, which is better than the national average).

We met with the transplant team, have gone through all of the required tests and steps, and he was added to the recipient list this morning. We don't know how long it will take to find a heart that will work for Noah.

Please pray for Noah and for us as we venture down this ever-winding road. We are both scared, but we know that God is in control. #AHeart2Build

www.facebook.com/AHeart2Build
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Update 10
Posted by Shari Robinson
35 months ago
Today Noah had a Cardiac Cath ( http://www.chop.edu/healthinfo/cardiac-catheterization.html) procedure done to help the doctors better see how his heart is doing and what their next step should be.
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Dawn Shaw
34 months ago

I am very relieved that the heart transplant was able to happen in short order and that so far it seems to be successful. Wishing the best for little Noah and the family.

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Leslie Stull
38 months ago

I do not know you but I would like to congratulate you and the family on the birth of this little beautiful miracle of life. My son was also born with HLHS. He is almost 15m old now. He has made it through the first 2 heart surgeries but has recently been discovered he is no longer a candidate for the last surgery. Raising money for this family is such a blessing to them. It's hard enough to deal with all the stresses of taking care of this special child let alone having to worry about all their medical expenses. I hope and pray that everything goes wonderfully and that he will recover soon and you will be able to take your little miracle home sooner than you think! Congrads.

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$20,035 of $100k goal

Raised by 226 people in 41 months
Created June 26, 2013
$5
Anonymous
38 months ago
BB
$5
Brian Beavers
39 months ago
$5
Anonymous
40 months ago
LP
$5
Lauren Poulos
39 months ago
$10
Michelle Sekusky
36 months ago
JM
$10
Jamie Marshall
39 months ago
$10
Anonymous
40 months ago
NB
$10
Norman Batts
34 months ago
$10
Anonymous
38 months ago
MR
$10
Michelle Reeves
39 months ago

Best wishes to you and your family!

Dawn Shaw
34 months ago

I am very relieved that the heart transplant was able to happen in short order and that so far it seems to be successful. Wishing the best for little Noah and the family.

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Leslie Stull
38 months ago

I do not know you but I would like to congratulate you and the family on the birth of this little beautiful miracle of life. My son was also born with HLHS. He is almost 15m old now. He has made it through the first 2 heart surgeries but has recently been discovered he is no longer a candidate for the last surgery. Raising money for this family is such a blessing to them. It's hard enough to deal with all the stresses of taking care of this special child let alone having to worry about all their medical expenses. I hope and pray that everything goes wonderfully and that he will recover soon and you will be able to take your little miracle home sooner than you think! Congrads.

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