LGMD “ Spotlight Interview”

名称:  Asher  年齢:  10 yrs. old

国名:  New Zealand

LGMDサブタイプ: Unknown

*** (Asher’s mum Chloe assisted with the interview ***

 

何歳で診断を受けたか:

Asher was diagnosed when he was 5 years old.

最初の症状は？:

He was slow to crawl, stand and walk. I noticed he struggled in comparison to his peers to use the playground equipment and run races as a preschooler and when he first started at school.

ご家族にLGMDの方はいらっしゃいますか？

Asher is the first person, we assume he has a recessive form of 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？:

Asher says “My greatest challenge is that I can’t keep up with my friends and I get very tired. “

Asher’s Mum says “the hardest thing for me is the uncertainty of the future and worrying that I am not making the right decisions for his health and well-being. I wish we had a complete diagnosis including subtype so I had a bit more understanding of what to expect going forward”

あなたの最大の功績は何ですか？:

Asher says “Hmmm, I’m not sure. That’s deep. I have done a lot of things. I guess my greatest accomplishment is when I won an award at the National Junior Disability Games for most promising Waka Ama Athlete. That was really good”

 

LGMDは今のあなたにどのような影響を与えていますか？

Asher says: “Well, I have a really cool power chair and that makes me pretty cool. My seat is more comfortable than most people’s seats are – so that is pretty cool. Plus I get to do really fun stuff like disability games and adapted sport. So yeah Muscular Dystrophy is good like that”

Asher’s Mum says: “having a child with a disability has changed a lot about our lives and what we had expected. It’s made me more understanding and empathetic of other parents’ challenges. I know what it feels like to be overwhelmed. I have signed up to be a support parent for others through an organization called parent to parent and I feel really good about that.  I like the idea that we are stronger together.”

 

LGMDについて世界に知ってもらいたいことは？:

Asher says “I want the world to know that it is hard and people who have it feel really tired.”

Asher’s Mum says “I’d like people to know that it is progressive so what people can do today they may not be able to do in the future. I think it changes the way we live our lives because we try to make the most out of every day and every experience.”

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？:

Asher says “I would run the cross country at school and not come last.”

Asher’s Mum says “the first thing we would do as a family is go to a theme park and do every ride. Then we would have a bubble dance party til late and not worry about anyone being too tired”

 

LGMDスポットライト・インタビュー "をもっと読みたい方、インタビューに志願したい方は、以下のウェブサイトをご覧ください。 https://www.lgmd-info.org/spotlight-interviews