Kylie's Room

Kylie was born with Titin (TTN) Syndrome, a variant in the Titin gene, which affects the muscles in her body from functioning properly. Though her condition has worsened as she’s grown, and she must use a wheelchair daily, she is very positive, wants to be more independent, and is a great kid!

ARTH identified Kylie as a candidate that could benefit emotionally and physically from a healing environment in her bedroom. Since she was born, Kylie has been sleeping in her parents’ bedroom, feeling comfort at having them close by. The project team’s goal is to transform her bedroom into a safe place where she feels comfortable and independent so she will start sleeping in her own space. Volunteers provided an adjustable bed/mattress that is the same height as her wheelchair, a transfer board to ease the transition from wheelchair to bed, a reliable way for her to communicate with her parents (Alexa system), LED lighting controlled by smart technology, and proper storage she can reach. A Room to Heal was also excited to provide her with a requested make-up and jewelry vanity, perfect for a teenage girl.

Linda Salomons, one of the co-founders of ARTH, who also serves as project manager, says that “the goal of this project is to create an environment that takes Kylie’s medical needs into account, while also allowing her warm and bubbly personality and various interests to shine through.” Salomons worked closely with Angela Grasso, past board member and professional interior designer, on the design of the room. “Using Kylie’s interests as inspiration, Angela created a design board with beautiful colors, textures, and décor – all that will bring comfort and excitement into Kylie’s life,” says Salomons. “She’ll love hanging out with her friends in her own room.”

During the reveal, Kylie lit right up and said that “this is the best day ever.” We are so glad your space was everything you dreamed it would be!

Special thank you to Kylie’s case manager and occupational therapist, LaRosa Carpet for their donation of carpet and installation, Alert Alarms, and to all of the volunteers who helped create this healing environment for Kylie. Thank you to the Floyd Hooker Foundation for the generous grant that helped fund Kylie’s project.

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Learn more about Titin Syndrome at: http://titinmyopathy.com