It all started when Caroline noticed that 4-month-old Tommy couldn’t hold his head up on his own. Her pediatrician thinks that it’s just a slight developmental delay, but the more Tommy grows, the more his motor difficulties multiply. He can neither sit upright nor stand to try to walk like other children. More than 12 …
In the early 2000s, Gail Ouellette was touched by the story of a family whose little girl suffered from a very rare bone disease. As a genetic counselor, her role was to educate people about diseases. In the case of this little girl, who had a disease with a complicated name, her research found very …
In 2013, the Sedmihradsky family’s world came crashing down. Their son Max, 2 years old, was diagnosed with Duchenne muscular dystrophy (DMD). The news was devastating, beyond words, for Andrew and Kerri, Max’s parents. DMD is a rare disease, affecting mostly boys (1 in 3,500) and sometimes girls. There is no cure, and this degenerative …