I had this great letter from Ayumi Sugimoto in Auckland. Please read it, and if you are able to get along to see this and offer support that would be wonderful 🙂
My name is Ayumi SUGIMOTO – Originaly from Japan and have been living in Auckland since 2002. I am organaising Japanese Dance group called “Southern Stars” (www.yosakoinz.org.nz) in Auckland.
I would like to introduce one of my friends called Ayame YOSHIDA who aged 12, living in Japan and has a Pompe disease (Also he has a autism). When Ayame was 2 years old his doctor said he has a muscle disease then when he was 5 years old the doctor found that he has the Pompe disease. Then in 2007 when he was 7 years old he started get the Myozyme treatment.
Because of Ayame was a little boy he didn’t understand what happned in his body also why he need to have the Myozyme treatment so that he was crying while his treatment and didn’t want to do it. Then his mum (Kasumi) wrote a story book (~A Warm and Fuzzy Heart~) for him to understand why he needs the treatment. Amazingly since he had read the book he understand how important the treatment, no more crying and go to a treatment room by himself.
While Kasumi (Mum)was waiting his treatment she read the book to children and parents who were in the hospital. All the people were moved the story and asked her to make the book for them. Because of the book was handmade even she wanted to give it to many people it wasn’t so easy. But last year after lots of support, the book was able to published (You can read it from our web-site www.yosakoinz.org.nz . We helped translation so it has English too). Kasumi(Mum) would like to return something to people, supporters, and organizations so that she has donated the profit of the sales to the Make a Wish and Pompe patients association etc..
Why I am writing this email to you because New Zealand is Ayame’s special place.
Why New Zealand is Ayame’s special place? Yes! he has visited New Zealand three times and is going to visit on 23rd November 2011 again.
In 2007 when he started the Myozyme treatment his parents weren’t sure what will happened to him so that they wanted travel together somewhere in spacial. Then they choose to came to New Zealand. At that time Ayame was smiling which Kasumi had never seen such a brightly face all the time and talk to people which Ayame usualy didn’t in Japan. Ayame enjoyed staying in New Zealand and wanted back to New Zealand but it wasn’t so easy. Then parents asked to the Make a Wish to support his dream to come to New Zealand again in 2008.
I mentioned earlier in this email that I am organising a Japanese dance group in Auckland. Ayame has joined us since 2008 when our group went to Japan to participate at a Festival. Then in 2009 he came to New Zealand to participate with us at the Farmers Santa Parade (We’ve been participated every year).
Actually the doctor was surprised that he was able to perform our dance which has tricky and quick movement also he wasn’t able to do it before but Ayame did it.
This year the Farmers Santa Parade will held on 27th Nov 2011 in Auckland so they are coming to perform with us.
I know you are not living in Auckland but if you are able to visit Auckland please come to see/meet them.
I read through your web-site and understand that you are not able to receive any funding from country yet. But I hope you will receive funding soon.
Thank you for your time to read this email.
I look foward to hering from you soon.
www.yosakoinz.org.nz (Southern Stars: Japanese dance group in Auckland)
Thank you for posted my email here.
Yesterday Ayame enjoyed the Farmers Santa parade very much.
I explained you and your friends, who has a Pompe disease, situation in New Zealand to them.
Then they would like to meet you and give the book to you but I know you are in Flolida but do you think your son who is living in Auckland can meet them?
Ayame and Kasumi is staying in Auckland till 3rd Dec and have time on 1st and 2nd Dec.
I look forward to hearing from you soon.