Factor seven deficiency hemophilia

The story of Shannon for Ace

Our story began with the birth of my son Ace. He was born with bruises all over his body. The Dr said it was from his traumatic birth. When he was circumcised He bled a lot, but according to the dr, “not enough to worry about. ” Ace has always bruised easily, had 20 minute nose bleeds and a lot of bleeding when it came to loosing teeth. Every doctor said the same thing “he must pick his nose a lot” or “let’s see if he is anemic”. After a head injury sent us to the dr, blood work was done and he tested positive for two out of the three markers for leukemia. After three months of blood tests we received the diagnosis of factor seven deficiency hemophilia. His is an inherited disease. Ace is the second child to ever be diagnosed in Iowa, so far. We were referred to a hematologist at the University of Iowa. Unfortunately for us the treatment center had never had a child like Ace before and refused to give him the medication he needed. They had little to no information about FVIID to share with us. After a year of worry and limited activity for Ace we found The Ladybug foundation. What a life changing experience! We received a lot of information, met a lot of kids and adults just like Ace, and even found a doctor who knows how to treat FVIID. If it weren’t for the Ladybug foundation we would be lost. It’s been a year since the diagnosis and I’m happy to report that Ace is doing well. He knows how to cope with bleeds and is learning to treat himself. Ace has returned to normal activities and looks forward to educating people about his type of hemophilia.