Leila
  • Female
  • New York, NY
  • United States
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Leila's Friends

  • Jamie
  • Ian Anthony Griffiths
  • Janine
 

Leila's Page

Profile Information

About me:
I have a brother with Duchenne Muscular Dystrophy who is just 1.5 older than I am. I live at home with my parents and Steven. I am a teacher and was born and raised in New York City.
Name(s) of child(ren)/individual(s) with Duchenne:
Steven
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
New York, NY

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Comment Wall (3 comments)

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At 3:56pm on May 11, 2010, Jamie said…
Leila,

I saw your post on the sibling page. I am 27 and have a 25 year old brother with BMD. I've also had trouble connecting with other siblings my age - it is very hard for others to understand what it is like! I still worry about my brother but not as much as I used to. It has taken a lot of time and seeing a therapist for me to begin to accept that there are just some things I cannot protect him from.

I am also curious if you are a carrier. I am, and recently became pregnant through IVF with genetic testing (PGD) so we know our baby did not get the MD gene.

Thanks for sharing your post,
Jamie
At 11:12pm on May 5, 2010, Janine said…
Leila,

Have you ever been tested for carrier status? My daughter is 19 and in her first year of college. I am a carrier, she has not been tested. I asked her almost a year ago if she would like to find out. She replied that at this time she would like to know if she wasn't but didn't want to know that she was right now. I am quite curious but I have left it up to her to decide.

Regarding your post I think she is dealing with her brothers dmd well. Do you think maybe I shouldn't assume that and ask her directly?
Janine
At 11:28am on May 5, 2010, Ian Anthony Griffiths said…
Hi Leila, Hope you and your brother are all Ok. Thanks for adding me. Ian
 
 
 

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