Northwest suburb comes together for 3-year-old with rare neurological disease

ByStephanie Wade WLS logo
Sunday, September 25, 2022
Northwest suburb comes together for 3-year-old with rare neurological disorder
The funds raised Sunday through "Austin's A-Team" event will help pay for nursing care, any home renovations and equipment needed for his care.

ROSEMONT, Ill. (WLS) -- It was a party Sunday at All Saints Cathedral in Rosemont.

Fire trucks, bouncy houses, raffles and a DJ all came out to support a smiley little 3-year-old, Austin Rose.

"I think it's amazing. And, it's good, because we need to, so we can help him," said Colin Rose, Austin's brother.

Austin has a rare neurological disease called PCH-6. It's a debilitating disorder that causes him to have seizures and physical delays and requires him to eat through a g-tube.

The disease is so rare that there are estimated to be only 40 diagnosed cases worldwide.

"He has limited mobility in speech, but he's very cognitively aware. So, anything we can do to make him smile, something like this, the things that this provides, goes a long way," said Brian Rose, Austin's dad.

Austin requires a full-time nurse. The funds raised Sunday through "Austin's A-Team" will help pay for nursing care, any home renovations and equipment needed and their frequent travels out of state for his drug trial appointments.

"I think it just shows how much love everyone has for this strong little boy. And, everyone recognizes what a fighter he is, and we're just here to back him up," said Laura Rose, Austin's aunt.

Through it all, Austin's dad said he smiles every single day and spreads so much joy to those around him with his contagious laugh.

They're hoping to share Austin's story to find others like him and give them some hope, too.

"Just how much community can mean to a family because this is really, it takes a village to the highest level. And we appreciate it," Brian said.