In September 2012, at age 14, my son Scotty, was diagnosed with facioscapulohumeral muscular dystrophy. FSHD effects the muscles in the face, shoulders, and arms. Due to the muscle weakness of the torso, it has also effected Scotty’s walking and the way he does many, many things we, as healthy people, take for granted. Over the next two and a half years, Scotty and our family have had to adjust and learn how manage everything that came along with his diagnoses. It has been an up and down emotional ride and more so on Scotty than any of us.
As soon as we received the diagnoses, we began learning everything we could about FSHD. Because of the rarity of his particular muscular dystrophy, finding anyone who has it has been a challenge. Through the help of my sister, we found two Facebook groups, both dedicated to FSHD, and have finally begun to connect with people and families who are also living with FSHD.
We recently found out that there is a conference in Boston on August 16, 2014, that brings together patients, families, doctors, and researches. And this is where we need help. Scotty wants to go. He will finally be able to connect with others like him. He can ask questions that he hasn’t been able to get answers to. And I can get information into the current and on-going research into FSHD.
I need help getting Scotty to Boston. Our goal is $3000.00. It will help cost of the travel, the conference fees, hotel, food while in Boston. Whatever is left from the cost of going to Boston will go towards helping pay for therapies for Scotty.
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