April 24, 2020
Joseph Timperley has been fighting for freedom his whole life.
Imprisoned by his own body, Joseph longed for the day he could simply be a kid.
Born in February 2008, Joseph displayed symptoms of normal, newborn jaundice. But it didn’t take long for his doctors to know something much more serious was going on.
He was diagnosed with biliary atresia, an incurable disease of the liver that blocks the flow of bile from the liver to the gallbladder. The buildup of bile in the liver eventually leads to cirrhosis.
A surgery at six weeks old temporarily opened the blockage and bought Joseph time — time to grow and get stronger — until a transplant would become inevitable.
Joseph’s parents, Brent and Jenn, were filled with fear and panic. It was terrifying knowing Joseph’s life was in the hands of someone they’d never met. But having faith that one day he would be saved by this hero eventually turned to feelings of hope.
“We thought about that every day,” said Jenn. “We lived with such gratitude for the donor and family that was out there, unknowingly ready to give Joseph his future.”
Joseph’s first few years were extremely hard. There was complication after complication.
Anytime he had a fever, Joseph would be admitted to the hospital. A fever could be the sign of a serious liver infection. Joseph spent more than 100 days in the hospital. He endured transfusions, surgeries, scans and home IV therapies, to name a few.
As Joseph got older, the disease became somewhat manageable. There were minor bumps here and there, Jenn said. But he did pretty well for a few years.
For Joseph, the hardest part was the limitations the disease placed on him.
No football or other contact sports. No jumping on trampolines. Nothing that would cause bleeding.
The restrictions were difficult for his parents, too.
“Living each day with his life being threatened was really hard,” Brent said. “We just wanted him to be healthy and happy. We wanted him to get to do all the things that biliary atresia had prohibited him from doing.”
Joseph’s “normal” was blood draws every 4-12 weeks, ultrasounds, scopes and clinic with the transplant team. And waiting.
Waiting out the frequent nosebleeds and bruising he experienced because his blood wasn’t clotting properly. Waiting for the day he could eat more than a few bites at a time without stomach pain. Waiting for his spleen to return to normal size so it wasn’t pushing on his lungs, making it hard to breathe. Waiting for the right time to be listed for a transplant.
“I wondered how sick I’d have to get before I was able to get my transplant,” said Joseph. “I wanted a transplant. I wanted a transplant because I knew it would be the greatest gift of my life. I wanted it because I knew it would allow me to do all the things I want to do — even if I don’t do them all — I know I will be allowed the chance to do them. I won’t be told I can’t anymore.”
