I work part time as a dental hygienist and have recently completing my CNA program though PASCO to stay home more with my son Shawn whom has DMD.
About my family:
My husband Gayle I have been married 21 years. We have two children Kylie (16) Whom attends Wheat Ridge HH Kylie has her drivers license now and is a great help with her brother Shawn. Then Shawn is (11) and is finishing up 5th grade at Kullerstrand Elementary School. Shawn recently got a skilled/companion dog named ELI.
Name(s) of child(ren)/individual(s) with Duchenne:
Shawn exons deletion 22-44
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Wheat Ridge
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Thanks Sonia for sharing this.
I didn't attend the conference and I am wondering if the presentatio will be able to be post in our PPMD website.
-Melanie
I make pants for our boys if you are interested. I have two of my three boys left. My oldest passed away one year ago today. I know the life you have, but it is still a great life, if we make it that way, don't you agree? My daughter is a carrier. She still wants children one day though, I have alot of mixed feelings about that, but that will be her decision not mine to make. Do you sew at all? I can tell you want I do for my boys pants to help. They are like break away pants, but only in the center seam. My personal email is TanyaTreas@aol.com email if you would like. How old are your boys at present? Mine are 15, 11. My daughter is 17.
I'm so glad that the pants work for Sean. The telethon was okay. I find it to be both physically and emotionally draining. Brian and the boys were interviewed. so that was good! I got an e-mail from Andrea asking if all of us could get together. What days might work for you?
Sonia, I just wanted to let you know that I have a website you can check out to purchase tear away pants for Shawn. They are located in the midwest and I know they have the pants online. The website is mcsports.com. My mother-in-law bought the boys several pair. Let me know if you have any success.
Thanks for coming to the Golf Tourney yesterday!!! What great kids you have, you should be so proud!!! Shawn's smile while riding on the golf cart made both mine and Darrell's day!!! Looking forward to seeing you all soon!
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Our boy Dylan has a deletion of Exons 16 to 43. we live in Ireland. Dylan is 5 years old. So pretty similiar to Shawn.
Hope things are good with you all!!
Damien
I didn't attend the conference and I am wondering if the presentatio will be able to be post in our PPMD website.
-Melanie