Sonny Ebdale - Let's Help Sonny Battle Duchenne Muscular Dystrophy

On the 6th June 2019 at Auckland's Starship Children's Hospital, Sonny's mother Renee was told the most devastating news.

Sonny was diagnosed with Duchenne Muscular Dystrophy.

Now, if you haven't heard of it you probably wondering what Duchenne Muscular Dystrophy (DMD) is. DMD is a disease that affects all the muscles of the body - the arms, hands, legs, and feet.

Over time his respiratory system fail and when it does worsen he will need to use a mechanical ventilation. DMD also affects facial muscles, which will make it difficult for Sonny to chew and swallow. This followed by heart issues like cardiomyopathy which lead to heart failure and arrhythmia. This devastating disease also causes back problems like lordosis and scoliosis and eventually the need for back surgery.

Also affected is the brain, which can cause intellectual disabilities, behaviour issues such as obsessive-compulsive disorder, ADHD, ADD, and Autism. Typically boys like Sonny diagnosed with DMD loose their ability to walk between the ages of 10 and 14. Sonny will loose most of his upper body strength, including the ability to move his arms, by his late teens.

During Sonny's teenage years, he will need respiratory support at night. Over time, his respiratory system will weaken and he will require more constant support.

Medical data suggest that young men with DMD survive only into their 20s.

Let's give Sonny the best quality of life possible.