(Editor’s note: In 2008, The Register published a story about Ty Stokes, then 2, who struggled through each day with kidney dialysis. Today, Ty is on a transplant list to receive a new kidney.)
CARLYLE — Imagine being four years old and unable to eat chocolate or drink a cold glass of milk. Having to stand by the poolside and watch your brother and sister play in the water. Not being able to take a shower due to a life-saving catheter in your body.
Ty Stokes, son of Rachel and Josh Stokes, was born with end-stage level 5 kidney failure and has lived with its limitations since birth.
Rachel Stokes said her pregnancy had been without incident until a few weeks before her due date. During a visit to her doctor, tests showed the baby was retaining excessive fluids, especially in his kidneys. The family was living in Pittsburg and she was rushed to Freeman Hospital in Joplin, Mo., for an emergency cesarean section.
Ty’s health began to decline in the neonatal intensive care unit at Freeman. He was life-flighted to Children’s Mercy Hospital in Kansas City. For the next year and a half Ty spent months at a time in Children’s Mercy fighting infections and enduring five surgeries.
His parents hope his next stay at the hospital will be to receive a new kidney — and a chance for a normal life. He is now on a transplant waiting list.
Ty’s doctors told the family most transplant patients wait from one day to six months for an available kidney. Even then, the available organ may not be a match for a particular patient.
To get through each day now, Ty is required to take nine medications. Once he receives a new kidney, that number will drop to two. Ty’s nightly companion is his dialysis machine. The machine does the work of his kidneys, cleansing the blood of impurities.
While on dialysis, the family can’t have a dog or cat because such animals shed and could contaminate the sterile environment of Ty’s bedroom or chew through the tubes of his dialysis machine.
As an Easter treat his parents gave Ty a baby duck which he calls Cluck Cluck. It can’t bark or meow but it can chirp.
“Ty is a little trooper and never complains. He loves to be outside and run and play with his brother, Killian, 9, and sister, Hailey, 5,” his mother said.
If all goes well, when a kidney becomes available, Ty will spend about two weeks in the hospital. Expenses will be covered by Medicaid and Medicare.
The doctors told the Stokeses most kidney recipients live at least 10 years before the body begins to reject the new kidney.
“We are hoping Ty’s new kidney will last at least 20 years. If not, I will give him one of mine. We want him to have as many years as possible without being on dialysis,” his mother said.
A new kidney would mean a brighter future for Stokes. He would be able to begin preschool, play in the swimming pool and eat typical children’s foods.
The one thing Ty won’t be able to do after the transplant is play contact sports, but as his mother said, “I just want him to be able to experience normal, everyday activities.”
