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.
Hi pls share ur contact details.. my phone number 9061403316