My BRAVE Story: These children and young adults deserve to have a good long life as much as everyone else

My son Brent was diagnosed with Duchenne Muscular Dystrophy when he was 2 months old, he is 6 years old now. My 15 year old nephew Jt also has this disease. This disease is progressive, weakening the muscles and it's eventual result is an early death. It has been hard coping with my son and nephew having this. As time passes, they are weakening more. Although my son is young and able to walk I know that one day he will be confined to a wheelchair and the chances are slim that he will reach 30. He does fall,has pain in his legs, has difficulty walking, cannot keep up with his peers physically, and also has speech delay and learning disability which may or may not be due to the disease. He was in a clinical trial which I believed worked because he fell less, didn't fatigue as much and his overall physical ability seemed to improve. As of now the trial has been discontinued until further notice. My nephew hasn't walked for 3 years, has to have a CPAP machine at night,and now has to take medication for his heart. I cannot begin to imagine what is going through his head but I know it has to be pretty difficult. He was unable to be in the same trial as my son because he cannot walk anymore.

Having a child with this disease can be difficult at times but I have hope that they will find a treatment or even cure for DMD. These children and young adults deserve to have a good long life as much as everyone else!

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