Auburn Boy with Rare Disorder Receives Grant
The Hinkle family has been through it all. After their son Matthew was born with a rare disorder, life hasn’t been the same since.
Now, with help from the small community of Auburn, this family is starting to see big changes.
“Just cause he is not like all of the other kids it’s not a bad thing,” said Matthew’s mother Rachel Hinkle. “He is special just exactly the way he is.”
Matthew suffers from an undiagnosed Pediatric Neurotransmitter Disorder (PND). A disorder that is extremely rare, and in Matthew’s case, still unknown.
“There are eight neurotransmitter disorders that are known and he has been tested for all eight of them and they have been negative, so they believe he has one that has not yet been discovered,” Rachel Hinkle said.
Matthew’s parents, Rachel and Kevin Hinkle, say the hardest part is not having an answer.
“We don’t know what the future looks like, we don’t know a diagnosis, we don’t know what to expect,” Rachel said.
“Both of us were working full-time jobs and everything else so work on top of that was just a very overwhelming experience,” Kevin said.
An overwhelming experience that caused Rachel to quit her job so that Matthew could have around-the-clock care.
With only one income and spending thousands of dollars a month for Matthew’s medication alone, it adds up.
“We filed for bankruptcy, we had due two medical bills after that first year and a half and it really changed our life,” Kevin said.
To help pay for Matthew’s medical expenses, the Hinkles’ held a benefit, which is when one of their friends told them about Chive Charities.
“If you look at what Chive does, their organization, they really want to help the underdog, the rare cases, and Matthew is about as rare as you can get,” said Tom Appelt, a family friend.
Appelt submitted an application for a grant on behalf of the Hinkles’ and out of hundreds of applicants, Matthew received the grant.
“They asked the things we needed the most, mainly things our insurance doesn’t cover, really expensive things that we wouldn’t be able to get normally,” Rachel said.
The Hinkles’ received more than $17,000 to go towards a year of medications, a custom made wheelchair, and a communication device for Matthew. All items to help make life a little easier.
The money from the grant will also go towards genetic testing for Matthew, which will hopefully give the Hinkles’ some answers.