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Layla's Second Heart Transplant

$18,420 of $20,000 goal

Raised by 168 people in 16 months

Layla was born on March 30, 2007 with a congenital heart defect called Hypoplastic Left Heart Syndrome. She received 2 open heart surgeries before she was 6 months old but unfortunately went into heart failure in January of 2008. She was placed on the transplant list and recieved a new heart on April 24, just 1 month after her first birthday.

It hasn't been an easy road after her transplant to say the least. She has faced many complications including rejection, Tricuspid valve regurgitation, infections, Post-transplant lymphoproliferative disorder, smooth muscle tumors (which resulted in having her spleen removed as well as part of her liver and a small section of her intestines), Ulcerative colitis, Hypogammaglobulinemia
and IgG deficiency (which has required countless immunoglobulin infusions).

Despite all of that, 2016 was her best year and she wasn't admitted for any issues besides a routine cath and biopsy. However, at her yearly cath this April, the doctors discovered that she has Cardiac Allograft
Vasculopathy, a form of coronary artery disease specific to transplants that narrows the coronary vessels. There is no cure but we were hopeful that it wouldn't progress too quickly and that medicine would help.

In mid May, Layla was getting ready for her spring ballet and tap recital. She has a history of getting sick right before a recital and not being able to participate so we were especially excited for this one. I noticed that she was gaining weight rapidly and her torso and legs looked swollen. She was immediately
admitted for protein losing enteropathy, Ventricular ectopy and hypoalbuminemia. She got another cath and it was confirmed, her heart is failing, the cardiac allograft vasculopathy had progressed severely in just one month.

We were given two options, take her home, knowing that she won't have much time left, maybe a few months or a year or two with a pacemaker at most, or relist her for a second heart transplant. Our hospital doesn't have the resources or experience to perfom a second transplant with such high risks, mainly her PTLD history and splenectomy. We reached out to the two best hospitals in our state, but both said no to taking her. We then sent her records out to three other hospitals, one said no but two said yes. I can't explain the relief we felt that someone was willing to give her a chance.

We have decided to go to UVA Children's Hospital which is where her cardiologist just transfered to in May. We feel this is her best chance, however, we live in Pennsylvania and with all of this happening so quickly, we are scrambling to make the move.

Layla could be transported as soon as this week. Any donations will be used for the cost of moving, living expenses and anything insurance doesn't happen to cover. We know for sure that she will need to stay in Virginia for at least the first year after her transplant.

I'm 28 and for the past 10 years, Layla's health and trying to give her and my son the most normal life possible has been my focus. We have lived in the hospital for months at a time, spent countless hours driving back and forth to the hospital and I've always tried to avoid asking for help. But this is the biggest hurdle we've ever faced and any amount of help would mean the world to us.

Layla is a sassy, smart, fashionable sweetheart always with a smile or the infamous "Layla face". She loves dancing, singing, making her brother play barbies and being a princess. She has fought incredibly hard her entire life and it has been so difficult for us to watch. We just want to stay together in these tough times to give her all the support she needs. Also, any prays/postive vibes are much appreciated as we need them now more than ever.

Thank you so much <3 #loveforlayla

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I can't thank you all enough!!! Things have been crazy lately but I have wonderful news! Two weeks ago, on September 21st (exactly 2 months after being listed), Layla received her new heart!! She has been recovering incredibly well and there is even talks of being discharged next week! Because of all of your generous donations, we will be able to afford a place to rent while we stay close to the hospital for the next year! There are no words to express my gratitude!! Please please please, keep our donor family in your thoughts. A 16yr old from the Chicago area lost their life and in the midst of the worst pain imaginable, their family chose to save multiple lives, they chose to save my princess. Be an organ donor, it's the greatest gift you could ever give someone!
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I'm absolutely overwhelmed by the love and support we've received. I thank you all from the bottom of my heart. No new updates, we are still just waiting. It's very difficult not knowing when a heart will be available but we hope that it's soon. The odds are in her favor considering that she's listed as Status 1A, she's able to receive a donor anywhere between 40-120 pounds and she has no antibodies that will interfere . I talked with the surgeon last week and he is very confident that everything will go well when the time comes. In other good news, she hasn't had as many frequent episodes of heart block although she is still having PVC issues (extra beats disturbing her heart rhythm). And her albumin levels have been stable enough that she hasn't needed any IV doses. Her PICC line stopped working on Monday, but they were able to get another one in and working later that day. I have decided to start posting updates on her Facebook page, Love for Layla, so feel free to follow our journey there. Again, I thank you so much. Please keep the prayers/good vibes coming. This is only the beginning of our battle. <3 #loveforlayla
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Layla is officially on the transplant list as a status 1A! Thank you for all your support and prayers! We are one step closer! #loveforlayla
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Today was mostly a good day. Nana and Bram (Layla's sweet brother) made the trip down. However, her IVIG levels are low (which is unfortunately normal for her) so she needed to get an iv. She's never an easy stick but today took 5 tries before one finally worked. As usual, Layla was a trooper. We were moved out of the intensive care unit and down the hall to their "stepdown"! She had a great time playing games with OT and PT and they got to shoot paint out of syringes at a canvas/ the local baseball team players that were holding the canvas

We are absolutely overwhelmed by all the love, support and shares. I can't find the words to express our gratitude. Thank you all so very very much.
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$18,420 of $20,000 goal

Raised by 168 people in 16 months
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HF
$550
Hickey Family
10 months ago
$100
Anonymous
10 months ago
MR
$100
Michael & Mary Ryder
12 months ago
TT
$25
Tamie taenzler
13 months ago
$25
Anonymous
13 months ago
DZ
$100
Dennis Zane
13 months ago
MJ
$20
Michael Janinek
13 months ago
$25
Anonymous
13 months ago
$50
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14 months ago
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14 months ago
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