My son Elias was born a month early due to some pregnancy complications. Aside from having jaundice, he was a healthy, strong, six pound baby. After a few days in the NICU, my husband Tony and I brought Elias home. Unfortunately, Elias’s jaundice got worse when he was four weeks old and he was diagnosed with the rare liver disease, biliary atresia. We learned that he needed surgery right away, and that even if surgery went well, 75% of children with biliary atresia need a liver transplant before they reach kindergarten. It was hard to believe that our seemingly perfect baby was actually very ill.
Elias’s surgery in September 2013 went well, but by December things were starting to deteriorate. By the third week in January we were on a helicopter to Children's Hospital of Pittsburgh which specializes in pediatric liver disease. Elias was added to the national liver transplant list.
We were so grateful to be offered a room at the Ronald McDonald House of Pittsburgh. This allowed us to take turns staying with Elias or resting at the House. By mid-February, Elias was in acute liver failure and running out of time. Thankfully, Tony’s cousin Zac was a match and was willing to make the great sacrifice of serving as a living donor for Elias. On February 26, 2014, Elias received his ‘big boy liver’. The transplant went well and within 24 hours, Elias's skin was pink and pale and the whites of his eyes were actually white.
Elias spent two weeks in the hospital after the transplant and then several weeks at the Ronald McDonald House until he was stable enough to go home. The House’s self-contained apartments with kitchens helped me keep Elias safe from germs and make sure his fragile health wasn’t compromised. The staff and volunteers at the House were so good to us! Knowing I was with Elias on my own since my husband went back to work, they offered to bring up our mail or even a plate of food from the community dining room. Having the House attached to the Hospital was also a huge help to me since I didn’t have a car in Pittsburgh and Elias had several appointments each week. All told, we spent 58 nights at the Ronald McDonald House of Pittsburgh in 2014.
Research shows that being close to the hospital provides important psychosocial benefits for families. Consequently, families of children with chronic diseases who stayed at a Ronald McDonald House had a better than expected perceived quality of life. Based on our experience, I would say that RMHC made a huge difference in the quality of our life during this difficult time.
Elias will be two in July and he is in good health. And I am on a mission to encourage people to become registered organ donors and to spread awareness and support for RMHC. Running groups are just one way to support RMHC. Now that summer is here there are many fundraising options that don’t involve breaking a sweat: you can host a competition, a lemonade stand, or a barbecue or pool party to benefit RMHC. Or consider creating an online fundraiser of your own. Whatever you decide, know that your efforts will make a real difference in the lives of families like mine.
The Curry Family
Proud to Serve Military Families Across the Country
Captain Roger Curry, U.S. Navy, and his family are grateful for all that the Ronald McDonald House of Durham has done for their family.Capt. Curry’s daughter, Megan, suffers from Gata-2 Deficiency, a rare genetic blood disorder. Last year, Megan spent 198 nights at the House, which her father descri... Read More