BENEFITING: Children's Hospital of Pittsburgh Foundation
ORGANIZER: Children's Hospital of Pittsburgh Foundation
EVENT: 2018 Pittsburgh Marathon
EVENT DATE: May 06, 2018
As you all know, our daughter Alaina was born with Biliary Atresia nearly 11 years ago. It is a rare liver disease that caused scarring in her liver. The cause is unknown and her only cure was a liver transplant. After 15 months of failing to thrive, feeding tubes, and numerous liver infections, Alaina finally needed a new liver. Instead of watching her wait possibly years on a transplant waiting list, I went through testing to see if I could be her donor. Megan & I felt so blessed and grateful that my liver was a perfect match for Alaina.
After researching many transplant facilities, we knew the only place we wanted Alaina to be was Children's Hospital of Pittsburgh. They do more pediatric liver transplants than anyone in the world and their success rates are the best. Alaina was only 15 months old at the time of transplant. It was a 12 hour surgery and I donated 1/3 of my liver to Alaina. It was the most difficult time of our lives. For me, it was an honor being the person to give her a new chance at life. It was truly a miracle to see how her new liver immediately transformed Alaina. Just one day after transplant, Alaina's skin was not as jaundice and the whites of her eyes were no longer yellow! Two weeks later, her feeding tube was removed forever. Alaina had a healthy liver and she was finally thriving!
Here we are nearly 10 years since transplant. Alaina will be 11 years old on May 1st. She’s had a tough year dealing with 2 episodes of liver rejection. After high doses of steroids, her liver responded well but the medicine took its toll on her. Steroids have nasty side effects. Alaina also went through a major surgery last June. All of her abdominal muscles had split open so she had a piece of mesh placed to hold her muscles together. Her entire scar got re-opened and she could not do any physical activities for 4 months. She was so brave and handled the unexpected long recovery like a superhero. We were so proud of her. She loves to dance, is doing great in school, and is loving life like she always has. We will forever be grateful to her wonderful team of doctors and nurses at Children's Hospital!
As for myself, it's been a difficult journey. Being a liver donor, comes with complications and risks. I have been through 6 surgeries since transplant from hernias, several obstructions (2 in the last year) and an infection. I lost most of my stomach muscles through it all and will forever be restricted with certain physical activities. I have a mesh basically holding my stomach muscles together. It's been a very challenging time both physically and mentally for me. However despite all the pain and surgeries, I saved my daughter's life. I would do it all over again for her or any of my kids!
This will be my 6th year participating in the Pittsburgh Marathon and I will be running 13.1 miles in the Half Marathon on May 6th. Because of all the generous support from family and friends last year we raised over $11,675 for Alaina's Transplant Research Department! Over the last 5 years we have raised a total of $46,790 for transplant research! Words can't express the gratitude and appreciation we have for all of your generosity.
All of that money last year went towards Dr. Sindhi's transplant research lab to help fund one of his biggest research studies ever. He is working on finding a cause and cure to Biliary Atresia, the liver disease Alaina was born with. Over the years the money we donated to Dr. Sindhi's research has help paid for 600 DNA kits used to collect samples from Biliary Atresia kids around the world. Your donations also went towards a new FDA approved blood test called Pleximmune. Its the first test of its kind and was created by Dr. Sindhi. It can determine liver or intestine rejection in transplant kids. The purpose is to avoid putting kids through invasive biopsies and helps doctors predict rejection. Children's Hospital in Pittsburgh is the only place in the world that has this test. So believe me your donations are making a difference in Alaina and other transplant kids!
It's truly an honor to help this exceptional hospital because they saved our daughter's life and continue to make it better. Together we are helping Alaina & every other child benefit from the spectacular research and care at Children's Hospital of Pittsburgh!
Arlen Janet and Family
The Foundation is a 501(c)(3) tax-exempt organization, and it is a public charity under sections 509(a)(1) and 170(b)(1)(A)(vi) of the Internal Revenue Service Code.