Konner's Room

Konner is a 12-year-old boy with Pitt-Hopkins Syndrome (PTHS). PTHS is a very rare disease that affects fewer than 5000 people in the United States. This genetic condition affects brain and nervous system development, and it causes developmental and intellectual disabilities. PTHS affects Konner’s body temperature regulation, people with PTHS often have poor temperature control and cold extremities due to dysautonomia. He also has an impaired ability to sweat and very little sense of danger.

A Room to Heal transformed Konner’s bedroom into a place that functions better for his medical and emotional needs. The project team repaired his walls and ceiling, replaced the carpet in his room with an easy-to-clean flooring, and added a washable rug. Facher Appliance installed a mini-split cooling system, donated by FW Webb, to help Konner with temperature regulation. Alert Alarms donated and installed an alarm system to alert Konner’s family if he goes outside. In addition, they made his room a comforting and enjoyable space by focusing on his love of water…a custom fish tank was donated and installed by Creature Comforts and a custom mural was painted on the wall by our talented volunteer, Missy Glasgow!

Special thank you to Rich Fancher, Friends of ARTH, Larry Hall, Steve Mucolo, Shane Decker/Decker Construction, Mike Rowe/Alert Alarms, Michele Guinan, Morgan Bryant, Missy and Bryan Glasgow, Jen and Kyle Fancher/Fancher Appliance, Francesca Spinelli, Creature Comforts, Eva Gauthier, Steve Robertson, Becca Barton, and Kelly Smith.


Learn more about Pitt-Hopkins Syndrome at: https://pitthopkins.org/