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Jim Carbone
  • Male
  • Sandy Hook, CT
  • United States
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Jim Carbone's Page

Profile Information

About me:
I'm the father of a wonderful 3yo son who was recently (3mo ago) diagnosed with DMD. He is my only child and both my wife and I are trying to wrap our heads around this.

I'm not a religious person, though I have no judgement for those who are. In fact, I wish I could have that pillar to lean on right now, but will have to keep my faith in the smart people working to solve this. I am hoping for the best, but preparing for the worst. We have good friends and family supporting us, but life goes on for all of us. I work a stressful job and live in Connecticut where living is simply outrageous. Fortunately, we are in close vicinity to Yale Medical which is a Certified DMD center as of 2015.

I am also hoping to meet other people more similar to me out there who have been dealt a similar blow. However, I am easing in and not jumping into the deep end until needed - we opted for Disney instead of the national MD conference this year, for instance.

I'm currently trying to enjoy each day I have with my boy and dread the day I have to explain and hand this weight to him. That day will come soon as he is a smart little guy and is picking up on this at 3yo already.

To me, the most difficult part about this is they way every good moment, every smiling picture I see and every time I hear him say "I can't do it", i know what's coming. It's like there's a wheelchair hiding behind a tree in those pictures,or clear glimpses of hospital beds in place of his bed he sleeping in today or thinking about how he will feel when he finds out. The anticipation of loss for both us and him can be unbearable at times.

I'm sure I'm still feeling the initial blow and I hear it gets a bit easier with time. I just keep looking for updates on genetics and reading about technology which I don't understand too well yet.

Ultimately, I'm just trying to stay strong, support my family and give my son as good a life as I can while I continue to hope for treatments or even a cure to be found.
About my family:
My wonderful wife I and have lived in CT our entire lives. We decided to have a child very late (38). We have a wonderful home and Shiba Inu named Comet. We are all close and spend every weekend doing as much as we can.
Name(s) of child(ren)/individual(s) with Duchenne:
Kevin
Age(s) of child(ren)/individual(s) with Duchenne:
0-3
City:
Sandy Hook
State:
CT

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