08/07/2015:

名称:  Samantha  年齢: 7 yrs. old

COUNTRY: USA

LGMD Sub-Type: LGMD2i

 

何歳で診断を受けたか:

I was diagnosed at the age of 2.

最初の症状は？:

My mom and dad saw me fall a lot and I had trouble keeping up with my friends.

ご家族にLGMDの方はいらっしゃいますか？

No, I am the only person in my family with LGMD.

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？:

I don’t like not being able to run as fast as my friends at school.  It’s hard to do gymnastics but I still have fun trying.  My mom and dad make me take a vitamin called “CoQ10” and I don’t like the way it tastes.  I also don’t like wearing my stretching boots at night.   I don’t really like people knowing that I have LGMD because it’s kind of embarrassing.

あなたの最大の功績は何ですか？:

I’m proud that I can read chapter books now and that I am able to ride horses.  I am also excited that I can go off the diving board and swim in the deep end in the pool.   I hit the ball well when I play softball and I get excited when I make it on base.

LGMDは今のあなたにどのような影響を与えていますか？

I get to do lemonade stands and sell bracelets with my cousins to raise money for LGMD.   I’m lucky that I met other people who have LGMD when I went to a conference in Iowa.  They are my friends now.

LGMDについて世界に知ってもらいたいことは？:

It’s hard to have LGMD but sometimes I meet other people who have disabilities that are worse than mine and I realize that LGMD isn’t really that bad.

もし明日、あなたのLGMDが "治る "としたら、まず何をしたいですか？:

I would throw my stretching boots out the window and go to Hershey Park to celebrate!