TOLEDO, Ohio — Maureen and David Smith are beyond proud of their son, 27-year-old Chandler, who was born with Alport Syndrome.
Alport Syndrome is a rare genetic illness that numerous people in Maureen's family have. She, along with her mother are carriers of the syndrome, and men within the family also have the disease. According to the National Kidney Foundation, Alport Syndrome can cause kidney disease, kidney failure, eye issues and hearing loss.
"Every day he does something. It amazes me, that I actually gave birth to him," Maureen Smith said.
Chandler's illness never held him back and it doesn't seem to phase him too much.
"I've been in and out of the hospital my whole life," Chandler said.
His parents noted how he has taken the disease in stride and continued to succeed. Chandler graduated from Owens Community College in 2017 with an associate's degree, then went on to get his bachelors from the University of Toledo. He worked at ProMedica in Toledo through 2021 and then became a traveling trauma nurse with his girlfriend, Rachel Fogarty, in 2022.
The couple works, travels and manages his illness together.
Chandler said the disease slowly progressed as expected, so they never stopped living. However, in the spring of 2022, things took a turn and it was time for Chandler's father, David, to step up and donate his kidney to his son as part of a plan that had been in place since Chandler's birth.
"But about two weeks ago, we found out, that because of a cyst that was on his kidney (David) was not going to be able to donate," Chandler said.
Doctors made the decision based on health and safety concerns, they told David, to terminate the plan of letting Smith donate a kidney to his son. Given Chandler and David's rare blood type, O+, there are not as many matches.
"That makes me the angriest," David Smith said. " Can I just sign off on something? It's my son. I'm willing to take that risk."
"Now we're stuck trying to find another solution."
So, the family agreed it's all hands on deck to find a new donor. Fogarty created a GoFundMe page explaining Chandler's journey. Chandler also posted on his social media looking for help. The pair said they have had some folks reach out to Chandler about helping him, thanks to his work as a nurse, which made them proud and touched them.
Meanwhile, Fogarty said she does her best to keep them both looking forward.
"Wow that was hard, but we made it through," Fogarty said. "We're just looking for the day when we can celebrate all this."
The family said the good news is, they know firsthand that transplants do work. Chandler's grandmother was able to live another 27 years thanks to a new kidney. Both of Maureen's brothers have gotten kidney donations.