If you visited the Family House this summer, you may have met our former Guest Services Intern, Mya, smiling behind the front desk.
Mya came to Gift of Life Family House looking to support an organization that has done so much for families like hers. Mya received her own precious gift of life—a new liver—and wanted to give back to others on the transplant journey. “I found this position online and immediately knew it was for me,” she says, smiling. “It’s amazing to see the work that’s done here. I would absolutely work here for 40 years if I could!”
Shortly after Mya was born, she was diagnosed with biliary atresia, a disease in which a liver duct is either broken or missing. Her doctors were able to perform a hepatoportoenterostomy, a procedure where doctors sewed a piece of her large intestine to her liver to help it drain. However, this was only a temporary treatment, and Mya and her family knew down the road that she would still need a transplant to live a healthy life.
“Throughout my whole childhood, I was very different,” Mya explains. “If you looked at me, you could tell something was wrong.” Growing up, Mya suffered from severe splenomegaly, which is an engorgement of the spleen as a result of liver fibrosis. “I looked like I was about six months pregnant. Whenever I played outside or was in gym class, I had to wear a large plastic guard around my abdomen to protect my spleen from rupturing. That was hard, especially as a child, because it makes you very different from your classmates; it makes you the ‘sick kid,’” she says.
When Mya was 11 years old, she caught a stomach bug—something not uncommon—but this time, she didn’t bounce back as she normally did. She was hospitalized, had to use Skype to attend class, and was unable to see her friends. She also lost a significant amount of weight and was given an NG feeding tube that she kept for over a year.
Mya, her family, and her doctors knew her liver was deteriorating. She was placed on the transplant list at CHOP and waited 18 months until she received her precious gift of life from a selfless donor.
“It was a terrifying process,” Mya reflects. “I remember looking at myself and thinking that I looked like a skeleton, but I found peace in knowing that there was always an end road. My mom always told me, ‘Thank goodness it’s just liver disease. We know how to fix this, and it will all be okay.’”
Mya got the call on April 9, 2013, which she now calls “the best day of the year.”
“All I wanted in my life was to not be different. I wanted to experience life without limitation and sickness…transplant gave me that and much more,” she says.
Mya’s transplant remains an important part of her identity today at 19 years old. “I’m never going to stop being open about my transplant,” she says. “And I won’t ever stop caring about this. I’ll never stop reminding myself how much I have to be grateful for, and I’m never going to feel like I can do enough for the people who saved me. It’s so important to keep in touch with that gratitude and never stop using it to fuel my life. That’s why I’m here [at the Family House].”
After working here at the Family House, Mya has changed her major to Health Behavior and Promotion and hopes to work with transplant patients in the future.
“Growing up, no one I knew had a connection to transplant. I was the only one, and I felt so alone,” she mentions. “Coming here, I don’t feel alone. You don’t feel like you’re the only one who is going or has gone through this kind of pain. I never had resources like this—it’s a really special thing about the Family House. It’s a whole big family here, full of love, support, and friendship. It’s heartwarming to see how much the guests love this place, and even more heartwarming to have played a role in it.”
Mya also wants to write children’s books about getting a liver transplant or what it’s like having a feeding tube, and has thought about starting a blog about nutrition for those using a feeding tube.
“I am definitely going to make sure this experience remains part of my life and my daily awareness,” she adds. “I’ve looked forward to coming to work every day, and to be included in this environment and in [the Family House’s] mission. Getting to know everybody has been so special, and I am so grateful for this incredible opportunity and place that I will never forget.”