Belleville child has rare disorder
Noah Gluck scoot-crawled quickly across the floor of his Belleville home and out of his mother’s sight.
Cassie Gluck described the 3-year-old as a “very curious boy,” who gets into everything like most toddlers. He likes “Sesame Street” and splashing in water. “He’s always been pretty friendly.”
But developmentally, Noah is at a 1-year-old’s level. He has a rare genetic disorder called cerebellar ataxia, which means his cerebellum is deteriorating due to genetic factors and he can’t walk. Now that Noah weighs 35 pounds, it’s difficult for Cassie and her husband Matthew to carry Noah up and down the steep steps of their Belleville home.
“We have fallen down a few times with Noah,” Cassie Gluck said.
So family friend Lisa Hayes, 42, of Belleville has organized a fundraiser at Bel-Air Bowl in Belleville on Sunday to help the family raise the money needed to build a bedroom for Noah on the first floor. Cassie Gluck, 27, also wants to add a bathtub to the half-bathroom nearby, which would allow her to bathe Noah on the first floor as well.
Hayes and Gluck met at a food cooperative three years ago and became close friends after they realized they both have sons with disabilities who are just two weeks apart in age. The boys are also friends. Noah and Hayes’ son Leo have play dates and attend the same school, Jefferson Elementary in Belleville.
“Noah is this amazing little boy who, despite what he is going through, is down on the floor playing with his toys and trying to pull himself up to walk around a table and stand there. ...,” Hayes said. “He always has this huge smile on his face. He’s determined despite everything he goes through.”
Community members and businesses have already stepped in to help with the first-floor bedroom project.
The First Christian Church of Albion had a fundraising bucket at their 175th anniversary celebration earlier this month. It raised $500, and the church matched it for a total donation of $1,000 to the Gluck family.
Cassie grew up in Albion, a community of 2,000 residents 124 miles East of Belleville.
Though church board member Bruce Longbons, of Albion, said he doesn’t know Cassie personally, he went to school with her mother Carolyn Shultz, and the church wanted to help the family.
“What that young family is going through with Noah’s complications,” Longbons said. “We wanted to help them, that’s why we have done what we have done — out of Christian love. It’s terrible they have to go through this.”
Gluck was surprised when she find out about what her hometown church had done for her family.
“I was not expecting them to do this much,” she said.
Liese Lumber Co. in Belleville provided the Glucks a discount on the supplies for Noah’s new bedroom, which will be built right off the front door of the house. It will reduce the size of the family’s living room by half. Tiffany and Dale Wilke have agreed to build the frame and drywall for the new room.
The fundraiser on Sunday will feature a raffle and silent auction to include donations from local businesses including Affordable Dentistry in Belleville, Office Max in Belleville, Grace Women’s Healthcare, Chick-fil-A in Belleville, Dr. David Norman (Noah’s pediatrician), Citizens National Bank of Albion, and the East St. Louis Department of Human Services.
Noah was “perfect” when he was born, his mother said. Just a little jaundiced and he needed some oxygen. It wasn’t until he was 3 months old that she noticed something was off.
“He stopped developing,” Gluck said. “He was limp like a rag doll.”
It was a long journey through different hospitals and doctors before Noah was diagnosed. In October, his third MRI showed his cerebellum was deteriorating, and he was diagnosed with cerebellar ataxia. Genetic testing revealed Noah had a mutation of the gene KIF1A, which is believed to be the underlying cause of the cerebellar ataxia, Gluck said.
As a result, Noah has global developmental delays with regression, spastic paraplegia, mild autism, intellectual disabilities and strabismus eye issues. The mutation has also caused his legs and feet to be underdeveloped, giving him a stubby short stature, and it has affected his body’s temperature regulation.
Noah has weekly physical and occupational therapy at St. Louis Children’s Hospital. And he will start hippotherapy, which uses the characteristic movements of a horse to provide motor and sensory input, his mother said.
Noah can crawl on his own, but he can’t walk by himself. He wears braces on his legs to support his weak ankles. “We are trying,” she said.
If he gets really sick, it can impact his cerebellum and cause him to regress.
“It’s so rare, we don’t know what his life expectancy is,” Gluck said.
Only one study has been done on KIF1A, by the University of California in San Francisco. One child in the study who had the same gene mutation as Noah died at age 1, Gluck said.
“Like all diseases, it affects everyone differently,” Gluck said. “He (Noah) takes it very well.”
The Gluck family is currently participating in another study being done by researchers at the University of California.
Noah doesn’t speak words, but occasionally Gluck said they have small conversations.
“They say he will never really talk,” she said. “We are working on ways to communicate.”
Noah loves books. His favorite: Flip, Flap, Fly! “I have it memorized,” Gluck said.
It’s difficult to cover all the expenses on just one income, Cassie Gluck said. She’s a stay-at-home mother, and her husband Matthew, a disabled veteran, works for the Department of Human Services. Cassie Gluck said she would like to work and have a career. She has a bachelor’s degree in social work. But it’s hard to find someone who can care for Noah. She has tried four baby sitters, but they were scared away by Noah’s disabilities.
Cassie Gluck is pursing a master’s degree at Lindenwood University in Belleville. Her family has been relaying on money from student loans and credit cards to pay bills and buy food.
The family does get some assistance from state agencies including the Division of Specialized Care for Children, which helped cover the cost of a wheelchair lift for Noah outside the front door of their home. The DSCC also covers some of Noah’s therapy sessions.
“We are just squeaking by,” she said, “but we are lucky for the things we do have.”
Want to go?
What: Fundraiser to include a silent auction, crazy bowling, face painting and a 50/50 drawing
When: 3 to 5 p.m. Sunday
Where: Bel-Air Bowl in Belleville
Cost: Admission is free. Crazy bowling is $10 for three games, and 50/50 tickets are $1 each.