Metro-East News

‘People like that are amazing’: With big help, a little Belleville boy with rare disorder gets new bedroom

Community comes to rescue with a new, accessible Sesame Street bedroom for Noah

Belleville family of boy with rare disorder gets help with house renovation
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Belleville family of boy with rare disorder gets help with house renovation

From Sesame Street toys to mirrors to pictures, Noah Gluck’s new first-floor bedroom is filled with all his favorite things.

“He loves Sesame Street. He loves to look at pictures,” said his mother Cassie Gluck. “He likes to look at himself.”

His mattress rests on a platform on the floor and is covered with blue and green colored bedding. Four large house-shaped picture frames display lots of family pictures and are hung low for Noah.

“They made them into houses to mimic Sesame Street,” Cassie said of the non-profit organization Special Spaces in St. Louis, which provided the design and decor for the room.

The dream bedroom became a reality for the 3-year-old who suffers from a rare genetic disorder after the community rallied around the Gluck family to raise thousands of dollars to cover the cost of the project. After a story appeared in the News-Democrat, Cassie Gluck said the family met their $4,000 fundraising goal and then some, for a total of $6,000.

After three years of carrying Noah up and down the stairs to his second-floor bedroom, Cassie Gluck said it was getting harder to do so as Noah grew taller and heavier. He is unable to walk on his own because of his condition. Noah is afflicted with cerebellar ataxia, which means his cerebellum is deteriorating.

The Gluck family wanted to build Noah a first-floor bedroom and an accessible bathroom, and they were able to do just that, thanks to the donations that poured in and an army of volunteers.

“It’s been amazing,” she said of the community response. “We have had people come up to us in a restaurant and pay for our lunch. He (Noah) just stole the hearts of everyone.”

Cassie said one kind, older woman donated $10 to help with the project. “People like that are amazing,” she said. “There’s been a lot of outpouring of support.”

For examples, she said, the Belleville Knights Templar Masons gave Noah a tricycle and a local church donated a month’s supply of diapers.

It’s been amazing. We have had people come up to us in a restaurant and pay for our lunch. He (Noah) just stole the hearts of everyone.

Cassie Gluck of Belleville regarding the community response for his son

Noah’s bedroom and bathroom project almost didn’t happen when Cassie found out construction couldn’t begin until a large support beam and columns in the basement of the home were replaced. They were deteriorating and couldn’t support a new wall.

Replacing the beam and columns was a costly endeavor, but it happened thanks to donated materials, including a steel beam from Rehkemper and Son in St. Rose. The Gluck home also had to be made level, which was achieved by raising it 7 inches.

The basement work was completed by Bryan Hawley, Tanner Martin and Mike Krauz, who discounted the cost for the Gluck family.

The basement work alone cost just $4,000 for at least a $10,000 job and delayed the bedroom and bathroom project, Cassie said.

Once the basement work passed city inspection, volunteers from Holland Construction in Swansea framed the new wall for Noah’s bedroom, which was erected in the middle of what had been the family’s large living room directly off the front door.

Scott Schanuel, spokesman for Holland Construction, said the project was included in the Belleville Helping Belleville community service day in September.

“Holland Construction wanted to participate in that event and contribute to improving a small part of Belleville,” he said. “This opportunity seemed to fit with our capabilities. It felt like the right project, and we were able to support the needs of this family.”

Another local company, Ehret Plumbing Inc. in Belleville, helped with the bathroom remodel. The family’s half bathroom was renovated into a full bathroom that is accessible, Cassie said, which will help Noah when he gets older and uses a wheelchair in the house.

This opportunity seemed to fit with our capabilities. It felt like the right project, and we were able to support the needs of this family.

Scott Schanuel, spokesman for Holland Construction

Volunteers stepped in to help with the drywall, painting and plastering and other labor including Larry Timmons, Monty Ellis and Jacob Staggs.

“I’m just so thankful I found the right people just in time,” Cassie said.

Once complete, Noah’s newly built bedroom and bathroom were outfitted by the nonprofit organization Special Spaces of St. Louis.

Lacy Gambill, director of Special Spaces, said Noah’s mother submitted an application with the organization’s national office in Tennessee, which was passed on to their office in St. Louis. Gambill said Special Spaces helps children who have a life-challenging or life-threatening illness.

To find out more about a child the organization will be designing a space for, representatives of Special Spaces meet with the family.

“It is very emotional when we meet these families,” Gambill said. “It’s definitely a very emotional process, but one we always leave with a smile.”

Special Spaces doesn’t share anything about the actual design of the room until the big reveal after volunteers have come in and completed the project.

Gambill said she and a friend designed Noah’s bedroom and bathroom. Her favorite aspect of the room is the house-shaped picture frames, which they repainted to match the other decor.

“It was really important to his mom to have a lot of pictures in his room,” Gambill said.

The bedroom has light blue walls, which allow the framed Sesame Street character pictures to pop out in their green, blue and teal colored frames. Brightly-colored letters spell Noah across the top of the closet. Storage is ample in the room as a bookshelf features eight cubes where toys and books can be accessed easily.

Noah’s bathroom has large wall signs reminding Noah to brush your teeth, wash your hands and hang up your towel. The shower curtain features aquatic animals, which Noah adores.

Noah loves his new bathroom and bedroom and has been prospering at hippotherapy in Imperial, Mo., which involves riding horses, and at Jefferson Elementary School in Belleville, according to his mom.

“He’s really popular at school,” Cassie said. “He has started walking with a gait trainer.”

Noah’s medical condition is progressive and has no cure. Genetic testing showed Noah had a mutation of the gene KIF1A, which is believed to be the underlying cause of the cerebellar ataxia. As a result, Noah has developmental delays with regression, spastic paraplegia, mild autism, intellectual disabilities and strabismus eye issues.

Cassie said doctors have no idea how long Noah will live. She is considering contacting Make-A-Wish and is thinking about a bucket-list for Noah, which may include a trip to Sesame Place in Langhorne, Pa., Adventure Aquarium in Camden, N.J., and a Sesame Street-themed cruise.

“He’s never been to the beach,” Cassie said, “but he loves sand and water.”

Jamie Forsythe: 618-239-2562, @BND_JForsythe

At a glance

These are the local companies that helped the Gluck family.

  • Rehkemper and Son in St. Rose
  • Kaskaska Engineering in Belleville
  • Holland Construction in Swansea
  • Ehret Plumbing in Belleville
  • Belleville Supply Company
  • Home Depot in Collinsville
  • Leise Lumber in Belleville
  • S&S Plaster and Drywall