A Muscular Dystrophy Support Group

My name is Marcel Ferreira

 and this is my story.

When my brother Marco was 3 years old, my mom and dad did not want him to be an only child. I was then born about 9 months later on the 10th December 1991, delivered by normal birth and weighing in at 2.950Kg.By the time I was 1 year old I had been hospitalized twice already with pneumonia. I could then already sit, stand and nearly walk unassisted. One thing I could never do was crawl, but I did however shuffle on my bottom.

When I was 15 months old, I  still could not walk, but then my granny noticed something by the way I played with my toys. I could never really grip my toys with my hands but instead, I held them between the palms of both my hands. My mom and dad took me from doctor to doctor, and after a series of tests were done on me (tests like; EMG, Lumber Punch and blood tests,), my parents were told that I had an Hereditary Sensory Motor Neuropathy, Type III, which was also known as Dejerine-Sottas.

About 6 years later my mom was told by the doctor that Dejerine-Sottas was the same as Spinal Muscular Atrophy (SMA). My arm movements slowly deteriorated and by the time I went to grade 0, I could only write by using my feet, but then that too became difficult to do so, I began using my mouth.

 Today, I  have basically no movement in my arms and hands, and very limited movement in my legs. I can still hold up my head but, I need support for my back. I have on various occasions been hospitalized with pneumonia, all that my parents are told is to make me comfortable, as my life span is limited. I have been doing very well for the last couple of years, my school work is great but my parents are still searching for someone out there, who is willing to help make my life comfortable.

 (July 2003)

Could that be you?