Jack's Room

Jack was born with a very rare mutation in the DEAF1 gene which caused Vulto-van Silfhout-de Vries syndrome (VSVS). This mutation affects his immune system and makes him susceptible to bacteria and viruses. At just 6 weeks old, Jack contracted bacterial meningitis and cytomegalovirus at the same time resulting in three small strokes and moderate brain trauma.

Now 5 1/2, Jack has intractable epilepsy, is nonverbal, and is a sensory seeker. Despite Jack’s challenges, he is an adorable, joyful child who loves to run, jump, and climb. He also loves animals and airplanes!
The main goal of Jack’s project was to create a space that was safe for him. In addition to safety, we also wanted to make sure it was a fun space that reflected Jack’s unique personality. The entire space was brightened up with a beautiful fresh coat of paint. Jack’s existing furniture was removed and replaced with a full-sized bed that sits low to the ground. The bed is upholstered in faux leather so there are no hard corners, and it is easy to clean. A closet system was added with drawers and lots of hanging space. We added interlocking safety mats and a 360° camera so Jack’s parents can keep an eye on every corner of the room. A sensory swivel chair allows Jack to safely receive vestibular input right in his room.

The finished design successfully meets the needs of Jack and his parents. The room is free of hazards, easy to clean, and offers peace of mind for the family. Jack now has a safe and functional space that truly caters to his needs.

Special thanks to everyone who made this possible: Kay Murray for leading her first room project! UHS Employees Federal Credit Union volunteers, Tom Murray, Rick Hoyt, and Ashley Marconi. Brushes Over Broome for donating their painting services, Stevens Paint & Blinds for donating the paint. Warehouse Carpet Outlet for a discount on flooring and installation. Alex Burrows for taking video footage of the project. Animal Adventure Park for the adorable lion and tickets to Jungle Bells. Floyd Hooker Foundation for their generous grant.

This transformation wouldn't have been possible without your support! Thank you for helping to create a safe and happy space for Jack!