TYLER, Texas — Finley Strother is just like any 1-year-old – playing with his toys, running around the house and laughing – only he isn’t like any 1-year-old.
Finley has Maple Syrup Urinary Disease – a genetic condition that affects about a 2,000 children in the U.S.
"It affects the ability for him to break down branch-chained amino acids – which dumbing down the science to common words, he can’t break down the proteins," said Cameron Strother, Finley's dad.
Within days of being born, doctors knew there was something wrong with Finley.
"So we got admitted into CHRISTUS, and then the next day we got life-flighted to Cook’s because he went into an encephalopathic state and he wouldn’t eat and he wouldn’t wake up," said Jean Strother, Finley's mom.
This is why Finley’s parents have to be very careful with what he eats. He must maintain a low-protein diet to avoid a metabolic crisis that could lead to brain damage.
"We have to mix up his formula each night based upon lab results that he gets every Wednesday," said Cameron.
The Strothers drive to Dallas for these lab results, since hospitals in East Texas don’t offer the ability to test Finley’s blood levels.
"It can cause the proteins in his blood stream to become elevated to a point where it crosses the blood brain barrier," said Cameron.
Right now, Finley is in desperate need of a new liver to help his health improve.
"Finley’s liver works just fine, just not in his body," said Jean. "Once he gets his liver transplant, his liver will go to someone else that is in need and it will save that life as well."
He’s currently on status 1B on UNOs’ transplant list which means he’s one step below the kids who need a liver within a 72-hour period. And once he does get that new liver, "he will be able to live a fulfilling life like each of us do," said Cameron.
But until then, they’ll be waiting on a call that will shape the future of baby Finley.
"We are trying to allow him the best quality of life possible is what our goal is so I don’t think there would truly be any word. I think we will be in shock when that call comes. It’s scary to make that decision and to put your child through another surgery," said Jean.
And while they wait for that call – Finley is just trying to be a baby.
"I think that’s what really keeps us strong is that he’s been strong through all of this," said Cameron.
The family will be hosting a dinner and silent auction on Oct. 29 to help with Finley’s expenses. You can RSVP by Oct. 22 by emailing cotaforfinleystrong@gmail.com. You can also follow Finley's journey by clicking HERE to see his blog.