Help Boone, A Baby With Williams Syndrome and Infantile Spasm Syndrome

15-month-old Boone has been dealt some tough cards, but he’s still a happy baby. 

He was diagnosed with Infantile Spasm Syndrome; seizures and stopped developing at 6 months old.

Also struggling with Williams Syndrome, the family from Charlevoix County is looking for help covering the costs of open heart surgery for little Boone.

“You would never tell he struggles because he’s so happy and so content and so affectionate and loving and loves to snuggle.” 

“We just love him and we hope everybody else does by just looking at him.” 

Looking at Boone, you can’t tell the hardships he faces everyday. But he’s nearly deaf, has seizures, and has a life threatening heart condition.

“His seizures were so bad he quit smiling quit laughing and all the milestones he hit went away. After they got him on medicine he started to get those back.”

Now, he needs open heart surgery within the next few months. A financial burden on top of other medical costs for his parents.

“She’s a strong woman she puts on a really good front for everybody. When you’re a mother, you’re like a bear. That’s how momma feels about her babies whether you’re a bear or human.”

They say despite all that life has handed the little guy, he’s still crossing milestones and smiling.

The family is hosting a benefit at the Boyne City Eagles Post on August 9 from 5:00 p.m. to 9:00 p.m. There will be food and auctions. 

If you cant attend, there is also a fundraising page HERE.