Fundraiser To Be Held For Local Baby With Rare Brain Disease

Update: The fundraiser has been rescheduled to Friday, Mar. 9, 2018. 

19-month-old Luke Henry has an extremely rare brain disease that requires extensive care, and the family needs help. His parents, Alison and Todd, were told that Luke would only have 3 to 9 months to live. He is one of about 250 people who have the condition.

Luke has Pontocerebellar Hypoplasia type 2A TSEN54 mutation, shortened to PCH 2a. This means the pons at the cerebellum of his brain is small. The pons of the brain is considered the primitive part of the brain. It controls things most don't think about, like heart rate, breathing, and digestion.  Luke cannot sit up, roll, crawl, walk, talk or swallow and needs 24/7 supervision and care.

With special care and equipment, Luke is alive at 19 months, even though he is at the developmental stage of a 3 to 5-month-old. However, this equipment and care come at a high price, and insurance doesn't cover all or sometimes any of it. A fundraiser is being held at Newburgh Brewing Company on Friday, March 2 to help raise funds for Luke. There will be a 50-50, raffles, and food and drink for purchase. The money will specifically be going towards an advanced wheelchair and gait trainer.

"With all of those limitations, he is still the happiest baby I have ever met. ''His smile can light up a room, and his giggle is the most amazing sound on the planet," Alison said. "He has been able to bring an entire community together and has brought so much love into our home. We are incredibly lucky to have a little boy like Luke."

If you cannot make it to the fundraiser Friday, you can donate through their GoFundMe page.

Alison also said, "Having this diagnosis has just opened our eyes to what’s truly important in life. Is it important to stay at work that extra five minutes or is it important to get home to your kids?"