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ST. GEORGE — March is Kidney Awareness Month, and a St. George family is using it as an opportunity to help find their son, who is living with no kidneys, a much-needed kidney.
Isaac Shakespear is the only boy in Utah, and possibly the world, living with no kidneys.
"Are you ready for your nappy?" Kasey Shakespear said to his son, Isaac.
Like any 16-month-old, nap time is a big part of the day. But every moment of every day is big for Isaac because he is here, surviving the unsurvivable.
"We weren't supposed to have Isaac," said Isaac's mother, Kristen Shakespear. "All the medical textbooks, all of the medical schools, they don't have anything that says our son can live."
He lives at home in St. George with his parents and two siblings.
"He's not supposed to be here," Kasey said. "This is a universally fatal condition. There's not been instances of kids just spontaneously surviving. One hundred percent of them die."
Kristen and Kasey learned about Isaac's condition — bilateral renal agenisis — when Kristen was 16 weeks pregnant. Doctors told them there was no fluid in the womb and that they couldn't see any functioning kidneys.
"When we found out about Isaac's condition, it was a big decision whether or not to try to do anything," Kasey said.
"My first gut reaction was to do my own research and find out what I could do," Kristen said.
Kristen found something called the RAFT trial, and within a week, secured her spot in the study, which required her to relocate her family to California.
"They call it a Hail Mary," Kristen said. "This is no guarantee. This is a trial basis. This is the first time it's ever been done."
Kristen received 11 surgical procedures called amnio infusions.
Dr. Martha Monson was one of Kristen's doctors in California.
"For him, undergoing those procedures, and for poor Kristen undergoing these surgeries every single week for months until he was born, that allowed him to be able to breathe at birth and to avoid the lethal condition we normally see in this condition," said Monson, who now works at Primary Children's Hospital in Salt Lake City.
Isaac was born at 33 weeks. He weighed a little more than 4 pounds and was put on dialysis almost immediately.
"It's been a whirlwind," Kasey said.
Dialysis at home now keeps Isaac alive.
"Our day-to-day consists of 24-hour care for him. We have everything set up in his room to do 11 hours of dialysis every night," Kristen said.
Next step, start the transplant process and find a kidney.
"It's wonderful to see his smile and giggle and to see him here and doing so well. To now be on this path for evaluation for transplant is pretty incredible," Monson said.
Isaac has already traveled from his home in St. George to Salt Lake City to have some of those initial tests.
His mom keeps everyone updated on Instagram.
A GoFundMe* page has also been set up for the family to help with medical bills.
*KSL.com does not assure that the money deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisors and otherwise proceed at your own risk.
