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
- Hickey Family
- Michael & Mary Ryder
- Tamie taenzler
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