Doctors diagnosed Owensboro-born Wyatt Young with a rare genetic disease called Hurler syndrome or MPS-1 during his newborn screen. His parents, John and Kindra Young, first discovered the condition during his newborn screen and remain steadfast in their efforts to help their young son.
They followed up with Cincinnati Children’s Hospital to confirm the diagnosis, which attacks multiple systems of the body. Kindra Young said children with Hurler Syndrome typically don’t reach their 10th birthday without treatment.
“We are having him treated at Cincinnati Children’s Hospital weekly right now for enzyme replacement therapy, and he will have a bone marrow transplant in October,” Kindra Young said. “These treatments have allowed children with Hurler syndrome to live well into their 30s with a better quality of life.”
Young added that Wyatt will still have a lifelong medical journey ahead of him, but with the support of family, friends, and the community, she knows they’re doing all they can.
“Finding out his diagnosis was devastating and scary. We had never heard of this before and had no idea what his life would look like or how long we would have with him,” she said. “It is hard having to leave our oldest two boys behind weekly, but we know they are well taken care of back home. Our family has made sure we have things taken care of so that we can have all of our focus on Wyatt and his treatments.”
After speaking with doctors at Cincinnati Children’s, the family hopes he will handle the treatments well and is optimistic that he will have a shot at a longer and better quality of life.
“We are moving forward with a positive attitude and are accepting things as they come with a hopeful outlook,” Young said. “We are so blessed with the family we have. We don’t know what we would do without them.”
Young said the community support has been “amazing,” and they are overwhelmed with the donations and various acts of kindness from community members. She said the contributions have eased the burden of medical bills, while the many donated meals return balance to their life.
Hurler Syndrome occurs in 1 out of 100,000 births, making it one of the rarest birth disorders worldwide. The family opened a nonprofit specifically for Wyatt called The Wyatt Young Foundation to assist with medical expenses, gas, lodging, and food while traveling to their appointments.
“We are hopeful for a cure in his lifetime, as many research studies are going on for Hurler syndrome,” she said. “We appreciate any and all help we receive, whether through donations or simply praying for us through this journey we are on.
“Everything left over that we end up not using for these reasons will go to another family in need in the same position as us.”
Zach Daniels is hosting a golf scramble to support the family at Ben Hawes on October 21 at 9 a.m. For more information, contact him at 270-316-9239.
