Defying the odds and living a full life
Twelve year-old Tristyn wasn’t supposed to live past age 4.
She was born with several of her organs outside of her body, and her intestines were severely damaged due to a condition called gastroschisis. Her parents, Jill and Leon Washington, were told she would never live a normal life.
“We didn’t accept it. We couldn’t accept it. We found hope at Children’s Mercy,” Jill said. “There have been ups and downs, but we treat Tristyn the same as our two sons – modifying where needed so it’s safe for her – and she is thriving. It has been remarkable.”
Since Tristyn’s body doesn’t absorb nutrients well from food, she receives nutrients through an IV. There have been long stretches of time when she has been in the hospital or received tube feeds but, overall, her medical team has found a plan that keeps her healthy. Tristyn is monitored closely by the Children’s Mercy Liver Care team.
“Her doctor is like family to us. We have complete trust in all of the staff that cares for her,” Jill said. “The nurses know us by name, and are so loving and caring. We have built a friend group though the hospital with other families who understand what we’re going through. The Child Life Team, which brings crafts and fun activities, keeps Tristyn’s spirits up. That, in turn, lifts us up.”
Early on, the Washingtons decided on a family mantra: ”We will get through whatever is placed in front of us,” Jill said. That mindset has helped them face challenges and keep the big picture in mind.
Tristyn wants to be a worship leader when she grows up. She loves singing and serving in her church, playing with friends and family, and making slime...her favorite activity of all.
“We want to make sure that she lives each day to the fullest and gets to enjoy life,” Jill said. “Children’s Mercy is helping us do just that. It’s so wonderful to be at home simply doing everyday things. When Tristyn does have to be in the hospital, we are thankful that she is so comfortable and loved there. As a parent, that means the world to us.”