LGMD “ Spotlight Interview”

名称:  Asher  年龄:  10 yrs. old

国家:  New Zealand

LGMD 子类型: Unknown

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

 

您在几岁时被确诊:

Asher was diagnosed when he was 5 years old.

您最初的症状是什么？:

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.

您是否有其他家庭成员患有 LGMD：

Asher is the first person, we assume he has a recessive form of LGMD.

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

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”

您最大的成就是什么？:

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 是如何影响您成为今天的自己的？

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.”

 

您希望世界了解 LGMD 的哪些方面？:

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.”

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

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”

 

要阅读更多 "LGMD 焦点访谈"，或自愿参加即将举行的访谈，请访问我们的网站 https://www.lgmd-info.org/spotlight-interviews