Parenting

Family with Muscular Dystrophy Heartbroken After Awaiting FDA's Approval on Drug

The reality of the Vertin brothers

Photo: The Vertin Family in front of the FDA Committee. Source: Newsweek.

Most boys suffering from DMD die in their 20's. Regardless of what mutation causes the illness, most people with DMD die in their 20's. Betty was told to expect her oldest son, Max, to be in a wheelchair full-time by the time he was 9 or 12. Fortunately, Max has already turned 12 in November and he can walk, he only uses an electric scooter for long distances.

He is also able to ride a normal bicycle without training wheels and he even plays the trumpet at school meaning that his lungs are working fine. Betty says that Ataluren has played an essential part in his ability to maintain physical shape through time. Max started the treatment 3 years ago.

Regarding Charlie, the youngest one, or Rowan, it is worth mentioning that Rowan is the one most severely affected by Duchenne.