LGMD “ Spotlight Interview”

이름:  Asher  나이:  10 yrs. old

국가:  New Zealand

LGMD 하위 유형: Unknown

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

 

몇 살에 진단받으셨나요?:

Asher was diagnosed when he was 5 years old.

첫 증상은 무엇이었나요?:

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.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

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

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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”

가장 큰 성과는 무엇인가요?:

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”

 

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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.”

 

LGMD에 대해 전 세계에 알리고 싶은 내용:

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.”

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

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”

 

더 많은 "LGMD 스포트라이트 인터뷰"를 읽거나 다음 인터뷰에 지원하려면 다음 웹 사이트를 방문하세요. https://www.lgmd-info.org/spotlight-interviews