This month were lucky enough to have one of our 2017 Curve Ball host our families attend our board meeting. Colton Janeliunus was diagnosed with Pitt Hopkins Syndrome (PHS). This syndrome is so rare that he is one of only 350 people in the U.S with the syndrome and, as far as is publicly known, the single person in Illinois diagnosed with it.
September 18th marked the 4th annual Pitt Hopkins Awareness Day, so we wanted to take the day to spread the word for our friend Colton and children everywhere who have been afflicted by this very rare genetic disease. Leading up to this year’s Curveball on March 11, our annual One For the Kids cocktail event in support of local Chicagoland children in need, we are going to help Colton’s family keep caring for their happy little “superhero”.
Pitt Hopkins Syndrome (PHS) affects a specific gene characterized by developmental delay, lack of speech, distinct facial features, gastrointestinal issues, possible breathing problems, and possible recurrent seizures. Eighteen-month-old Colton’s default demeanor is happy, and it’s no wonder, with the love of a strong family around him. Over time though, Colton’s parents became concerned that he seemed too content, too satisfied with his surroundings for a young child, and brought him to specialists who had some hard news for his mother, Shannon. If you would like to learn more about Pitt Hopkins click here. If you would like to donate to the cause, you can check out our home page here.
We are looking forward to raising money and awareness for Colton and the Pitt community!