Hunter's Hope
  • Female
  • Long Island, New York
  • United States
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Hunter's Hope's Friends

  • VELIA
  • Rose Ann Fiorenzo
  • Michelle Keen
  • Jenna Shaw
  • donna saccomanno
  • MaryEllen Sicoli
  • Rosalie
  • Colin McKenzie
  • MarcosDad
  • Lisa Jones
  • Alison Willis
  • Ryan Fischer
 

Hunter's Hope

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Hunter
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Long Island, NY

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...

Hunter's Hope's Photos

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Comment Wall (7 comments)

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At 12:47am on August 5, 2009, Rhiannon Traigle said…
Hi Hyacinth,
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
At 11:32am on April 7, 2009, Sharyn Thompson said…
Hi Hyacinth,

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
At 11:54pm on November 28, 2008, Lisa Jones said…
Hi Hyacinth! I haven't been on here in awhile and saw your comment on my page. All is going well. Hope the same for you and your family!
At 12:49pm on October 22, 2008,
Staff
Ryan Fischer
said…
Hey hon!!! I am so glad you joined up. Hope you like the community site.
You and I need to chat about stuff so call me tonight if you can.

xoxoxox
At 12:32pm on October 22, 2008, Kari said…
Thank you, but I did not take the pictures. When Jared was at MDA Summer Camp, someone there took the pictures. I only wish I was that good, but perhaps some day and with a better camera.
At 11:42am on October 22, 2008, Jenna Shaw said…
Thank you for the nice message. We do have alot in common. You also have a gorgeous family. Sounds like Hunter is a very strong boy. Your story is very touching. It's nice to see I'm not alone in this fight. My son Jacob was diagnosed in 2006 and sometimes I think I'm still in shock. Staying strong for those boys is my goal.
We had a great time at GKTW. We went last november and it was so nice.
Jenna
At 12:20am on October 22, 2008, Kari said…
Welcome to PPMD Community.
 
 
 

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