My granddaughter is 21 years old, and was diagnosed with PJS when she was 15, with genetic testing, and most all the characteristics of the syndrom, including an intussecption requiring a small bowel resection. She also has Tetrology of Fallot, and scoliosis. We have raised her since she was 12, and it has been a rough road for her. I cannot remember I time that she has not been in a lot of pain, and absolutely miserable. Unrelated to her Tetrology of Fallot, in the past year, after collapsing, she was diagnosed with Nonischemic Cardiomyopathy. I struggle with helping her deal with all of these issues, and her feeling so isolated and alone, because of her inability to get out a be around young people to make friends. I would love to find someone near her age that has to deal with health issues as well, that she could communicate with.