Event to benefit Belgium boy

Summer Nights Live, the concert, food and games series put on by the Belgium Area Chamber of Commerce, usually benefits community groups.

This Friday, the proceeds are again staying in Belgium but for a unique cause.

William Skinkis, 5, was born with spinal muscular atrophy, a disease in which the body doesn’t produce enough protein to make muscles.

He received a one-time infusion for $2 million that without it would have put his life expectancy at 2 years. He also gets spinal injections every four months and goes through weekly physical and occupational therapy.

William does intensive physical therapy of several hours per session for multiple days. The family has found that the Neurowerks in Bonita Springs, Fla., has worked the best. William, his mother Stephanie said, has gained muscle, works on being able to independently walk, and, most importantly, learns correct posture to minimize his scoliosis.

But Neurowerks doesn’t accept insurance, and the sessions are $10,000, along with another $5,000 to rent housing. The family has paid for it out of pocket and through local nonprofits.

Stephanie has been a firefighter in Belgium since 2023 and was a regular on middle-of-the-night calls since her husband was home for their three children.

For information or to make a donation, visit https://www.not2daysma.com.

Summer Nights Live runs from 6 to 9 p.m. in Community Park. Shad Lads will perform, bucket raffles will be held, a kids’ zone, kickball and a bounce house will be available and food and drinks will be sold.

The event is cash only but Venmo donations may be sent to @Belgium-FireDepartment.