Rafael
  • 36, Male
  • Connecticut
  • United States
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Rafael's Friends

  • Nevin Steiner
  • Ian Anthony Griffiths
  • Cheryl Markey
  • Kathy
  • Eileen DeLong
  • Maria Anne
  • Sabrina
  • Joanne Keeley
 

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Profile Information

Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Connecticut
Hello Everyone,

My wife and I are the proud parents to two beautiful boys, Ellijah and Noah. This year has honestly been the worst year of our lives. We found out in February that Ellijah has Duchenne Muscular Dystrophy. It kinda came out of the blue, because we were always told that Ellijah was "slow" at doing children like activies since he didnt have any older siblings to learn from. We were/ are devastated. So here we are, searching for information and hope.

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Comment Wall (9 comments)

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At 12:17am on December 5, 2009, Nevin Steiner said…
Hi Rafael,

I just got your message. I would love to get in touch and meet Ellijah. It's not always easy and any help one can get makes a difference. My e-mail is nevinsteiner@gmail.com. Look forward to hearing from you.

- Nevin
At 11:32pm on September 29, 2009, Nevin Steiner said…
Hi Rafael,

I live in Connecticut and have Becker's Muscular Dystrophy. I am twenty five and fully functioning adult. Please let me know if I can help guide you through this challenging but optimistic journey.

- Nevin
At 2:21pm on April 21, 2009, Ian Anthony Griffiths said…
Thanks for the friend add! Hope your well
At 12:46pm on April 21, 2009, Sabrina said…
Hi Rafael,
Martin has deletion of exon 49 to 52. He will be 11 in June. Martin lost the ability of climbing stairs nearly 6 months ago and it's very difficult for him getting up from the floor, but he's still able to walk.
Take care
Sabrina
At 11:29am on April 11, 2009, Kathy said…
Hello Rafael,
Sorry it's taken me so long to respond! I'm a landscaper, so I'm back in the thick of it work wise! Keelan is not on medication at this time. He's too young for that and clinical trials. He's still not walking, but he takes steps here and there. He has been sick all winter so we are hoping for a developmental spurt. EIP just pretty much ruled out Autism. We were getting worried because he stopped talking and started hitting himself and biting through his hand (ugh!). But we have ordered some 'Chewelry" and are hoping for the best! Were you deployed in Iraq? Thank you for your service, no matter where it was!
At 2:03pm on March 5, 2009, Kathy said…
Hi Rafael, I read your post on the NE page as well. We found out that our 17 mos. old son has DMD in December, so I can relate being a fellow 'newbie'. This website has been an enormous help to me. The support group through the MDA is helpful too. There is alot of reason for hope. Everytime I read more about the research and how far they've come even in the last year it makes me feel better. I had a down week as well since Keelan is almost 18 mos and is not walking and barely saying any words and tires so easily. But just when I was in the thick of it he said, "Doo-Thay" (aka; "Thank You") when I handed him a pancake. Then he decided to walk holding one hand! There's no such thing as false hope so hang in there!

We live in Haverhill, MA now, but I'm originally from Newtown, CT.
At 7:32am on October 4, 2008, Joanne Wechlser said…
Hi Rafael, You joined the right place for some support. My son was also 3 when we found out. He's 12 now. It is totally devastating to get the news, but it will get better or easier. Gaining knowledge is helpful, and there are reasons to have hope. Best, Joanne (Vermont)
At 9:38pm on October 3, 2008, Joanne Keeley said…
Hi Rafael,
We found out about my son Wyatt when he had just turned 3 years old in 2001. I was pregnant with my third, my daughter Sarah (now 7 yrs). I have a son who is 9 (no dmd). It was a complete shock.
If I can help at all, please let me know.
We see Dr. Brian Tseng and it's only 2 hrs. away. He tries to make the initial visit (with a handful of doctors!) in one day. We stayed one night in Boston.
Take care!
Joanne
At 1:26pm on October 2, 2008, Eileen DeLong said…
HI Rafael,
I'm glad you have come here. I know how overwhelming all of this is. Let me know if there is anything I can do to help guide you through this.
Eileen
 
 
 

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