Faye Condon was just 5 years old when she began falling for no reason on her way to school in Plymouth, England.
Doctors at Bristol Children’s Hospital diagnosed her with juvenile dermatomyositis, a rare autoimmune disease, and from 2019 subjected her to six cycles of chemotherapy, injections at home, and a muscle biopsy. Her mother, Christina, never stopped having doubts: every test for that disease came back negative; none pointed in that direction. Even so, staff insisted that it definitely was not muscular dystrophy.
Seven years later, at Great Ormond Street Hospital, a simple blood test with a specific genetic test revealed the truth: Faye has Emery-Dreifuss muscular dystrophy, an incurable condition that has already left her in a wheelchair. Christina maintains that no one in Bristol wanted to order that test because the studies cost money. Today, she only repeats that they lost the only years when her daughter could still walk.
