Hi All....
I would like to say hello to everyone out there in the PPMD community. Let me introduce myself...
My name is Hyacinth Respass Fiorenzo, of Long Island NY (formerly North Carolina). I am the proud mother of two gorgeous children, Hunter Montgomery (9) and Joseph Nathanial (4) and the wife of a most loving and generous husband, Joe.
Hunter was diagnosed with Duchenne by way of spontaneous mutation, a deletion of exons 13-24. Who would have ever thought that such a small window of our DNA could make such a huge impact on the lives of so many people? Especially Hunter.
But he's a trooper. Hunter has taken every change in stride and approached life with a smile on his face and warmth in his heart. Many times it is his persistent optimism that forces everyone else to accept the situation at hand. Our favorite saying is "It is what it is." God knows we can't change what life has handed us for right now but we can damn sure make the best of it.
And we do.
Hunter enjoys swimming, fishing, camping, video games, cars, carpentry and electronics, building, reading and telling jokes. He basically feels that it is his responsibility to keep everyone's spirits up and he takes his job very seriously.
At 9, he recently lost his ability to walk. In true Hunter fashion, however, he used his newfound wheelchair freedom to offer his help around the house and hold races with his brother. He doesn't let anything keep him down and it is that special drive that makes him the most influential and inspiring person that I have ever known.
As long as he can, he will keep rolling with the punches and smiling all the way. And we will help him because he needs us to. He wills us to.
Roll on, Hunter. Roll on...
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I saw the video you upload, which is wonderful!! I have been working on a video for an upcoming fundraiser. I am using Windows Movie Maker, but now that i'm almost done I noticed the audio is causing the video to skip during transitions. i was wondering which program you used, I hate to start over but want it to come out as great as yours!! Any help would be appreciated!!
Rhi
My name is Sharyn and you recently responded to my poem on You-Tube "My Boy, My Son". I just saw your video on You-tube and I have to say it moved me very much! What a beautiful child you have there, and he looks so very very happy! I am currently sitting here crying my eyes out after watching it - it was so very emotional to me!
Anyway, just wanted to let you know that I saw your video and how wonderful it was, and just like you the first half of it was very much like my son (he is yet to turn 5). I know that oneday we will make a difference, if we all keep raising our voices and raising awareness - oneday a cure will be found! We are doing all we can to raise both money and awareness in Australia - we recently raised $700,000 by organising a 1200km bike ride from Sydney to Melbourne. Every little bit helps! I just want to see boys like Hunter and James grow up and to live long and happy lives. That's my one wish in life!
Sharyn x
StaffRyan Fischer said…
You and I need to chat about stuff so call me tonight if you can.
xoxoxox
We had a great time at GKTW. We went last november and it was so nice.
Jenna