The Story
Colin’s diagnosis took years. His mother searched for answers until, at age 10, Colin learned he had STXBP1, a rare genetic neurological disorder that affects how his brain and body communicate. This condition causes seizures, developmental delays, and major challenges with muscle tone, speech, and movement. Although Colin had genetic testing when he was younger, the mutation causing his condition had not yet been identified by scientists. This highlights how rare and complex his diagnosis is.
Colin does not speak, but he communicates in his own ways, and everyone agrees he is a happy and loved young man. He is surrounded by a caring family, including two younger sisters who adore him and help care for him. Colin walks short distances, but he cannot stand on his own and needs help with almost every aspect of daily life.
As Colin grows older, his care needs increase, making it even more important that his home supports both his safety and independence. His parents work to help him be as independent as possible, encouraging him to use the toilet on his own. This milestone holds deep meaning for their family.
The bathroom has become one of the biggest challenges. Helping Colin into a regular bathtub is not only hard but also gets more dangerous as he grows, especially since he cannot bend his knees easily. Since Colin will always need care and keep growing, having a safe, functional bathroom is not a luxury for him. It is a necessity.
SOARD will renovate Colin and his family’s bathroom to create a fully accessible space, including a roll-under sink and a zero-entry shower. These updates will help Colin bathe safely and comfortably, support his independence, and meet his needs for years to come.
