Brandy
  • Female
  • Kirkland, WA
  • United States
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Brandy's Friends

  • VELIA
  • Kiko Van Zandt
  • Jennifer Martyn
  • Karen
  • Janelle Hester
  • Char Burke
  • PPMD
 

Brandy's Page

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Finn
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Kirkland
State:
WA

Comment Wall (9 comments)

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At 9:53pm on April 17, 2009, Jennifer Martyn said…
Hey Brandy! Finn has been on my mind quite a bit as I am looking at some staffing changes. I hope that in the next 2-3 weeks I have a spot for him. What did you find out re: insurance? Please tell Finn I said hello! Thanks for the note. Jen
At 1:20am on March 28, 2009, Char Burke said…
Brady - Will's doing ok but is 6 years 7 months. He's on Deflazacort. His mutation is a duplication 54-57 so it's significant. What is your son's mutation? We take him to Dr.Wong in Cincinnati. Hey - I know Carl's mom and dad - Tracy and Jim - very nice people. Met them at a DMD function. Sounds like your son is doing really well....I was looking for a friend that was closer to his age - do you know of any boys in the area that we could hook up with? Char
At 3:54pm on March 27, 2009, Karen said…
Hi

I don't think they will change the age back because of insurance issues, not because of the needs/ interests of the guys. I don't know if Erik is going. He is involved in the DO-IT program at the University of Washington the week before and I don't know if we will be able to turn it around to get him to camp in 24 hours. I hope he goes, since it will be his last opportunity, but the decision is his. When I know I will let you know.
Karen
At 12:15am on March 27, 2009, Char Burke said…
Hi Brandy - how old is your son Finn? I would like our son, Will, to have a friend who has DMD...We live near the University of Wa Char Burke
At 10:54pm on March 26, 2009, Karen said…
Hi Brandy,

Erik didn't go to camp until he was 11 or 12 either. He had too much fun hanging out with his Dad helping on our farm. When he finally went he had a good time. He met some silly boys that he only sees when he goes to camp. Unfortunately MDA has changed the age from 21 to 17 so this will be Erik's last year. I think he has gone for 4 years. He likes the pool, pranks and poker, but dislikes the dances and theme dressing. I think they try to make opportunities for everyone.
I think it would be great to get together with northwest families. Hope to meet you soon.
Karen
At 8:55pm on March 26, 2009, Karen said…
Hi Brandy
Welcome to NW families. We live in Burlington and our son, Erik is 16.
At 12:39pm on March 24, 2009, VELIA said…
You do not worry I either very well like doing it, as soon as I am learning, greetings
At 12:08pm on March 24, 2009, VELIA said…
HELLO BRANDY WELCOME TO THE GROUP, I FEEL MUCH THE ONE OF YOUR SON, BUT IT IS NECESSARY TO HAVE MUCH FAITH AND LOVE TO OUR CHILDREN, A VELIA GREETING JOSHUA BREAST
At 12:37am on March 24, 2009, Char Burke said…
Brandy - come and join the NW Family Group. It is on the group page....Char Burke = Seattle, WA
 
 
 

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