The story of Stefania
I was born 10 weeks early and I was diagnosed with Hirschsprung Disease at 3 days old. I was given a colostomy bag and everything thought it was all good. Had the reversal done and things weren’t too good. They repeated this procedure 6 times before realising I had Spotted/skipped segment hd. I was 5 when the doctors worked it out. With the first 10 years of living in hospital more then home, constantly getting infections and 2 cases of sciatic nerve damage and over 100 operarions, Hirschsprung’s tried to fail me. When I was 16 I had a sacral nerve stimulator put in my bowels to control my incontinence. It has been a life saver. At the age of 17yro I had my first child, Samantha. For thr first 4 days she was pooping. Then it stopped, 4 days later she was diagnosed with Hirschsprung’s Disease, nightmare all over again. Thankfully Samantha had a pull through and bowel wise is doing amazingly. In 2013 I had my son, he was also born with Hirschsprung Disease along with chromosome ring 9. (Another rare) but passed away at 9 days old.Â
I started up an awareness page for Hirschsprung Disease to fight back, and connect with other people who also feel alone. It has been an amazing experience connecting with so many people.Â
Â
Www.faceboook.com/kickinghd