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sulthana shaik
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sulthana shaik's Discussions

Exon 45 skipping/ exon 51 skipping, Help to make a hard decision !!.PLEASE HELP.

Started on Wednesday 0 Replies

HiWe are planning to participate in exon 45 skipping trail, for our 12 year old son.Is any one already enrolled in the exon skipping  trail for either 51/45/53, Can you please share your experience.…Continue

Tags: skipping, exon

Need special needs stroller

Started Jul 16 0 Replies

Hi , Our son Was diagnosed with duchenne muscular dystrophy around 5 years of age.Now he is 12 years old. We are struggling with our insurance get him a power wheel chair.In the mean while we are…Continue

Answering questions from strangers

Started this discussion. Last reply by Andrea Cleary Feb 8, 2016. 2 Replies

HiMy son is 10 years old with Duchenne . He has learning disability as well. He has a very short statute.I am in a very uneasy situation when strangers ask about his grade.When I say he is in 5th…Continue

 

sulthana shaik's Page

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sulthana shaik posted a discussion

Exon 45 skipping/ exon 51 skipping, Help to make a hard decision !!.PLEASE HELP.

HiWe are planning to participate in exon 45 skipping trail, for our 12 year old son.Is any one already enrolled in the exon skipping  trail for either 51/45/53, Can you please share your experience. Struggling to decide if it will be the best decision for our son.Are there huge risks?See More
Wednesday
0 Comments
Aimee Van Fossen favorited sulthana shaik's discussion Need special needs stroller
Aug 25
Andrea Cleary replied to sulthana shaik's discussion Answering questions from strangers
"You can just say he is smaller than his peers due to steroid use for a chronic disease (I'm assuming he is on steroids?). Then they may ask what disease, and on the days when you have the time, energy and patience you can turn it into a…"
Feb 8, 2016
Jay Griffin replied to sulthana shaik's discussion Answering questions from strangers
"Sometimes saying less is really saying more. I don't think you need to explain.."
Feb 7, 2016
sulthana shaik posted a discussion

Answering questions from strangers

HiMy son is 10 years old with Duchenne . He has learning disability as well. He has a very short statute.I am in a very uneasy situation when strangers ask about his grade.When I say he is in 5th grade, they have a look of astonishment on their face,Don't want to gain sympathy by Saying that he is in special ed .Can you guys give me any suggestions, to get out of such situations?Thank youSee More
Feb 7, 2016
2 Comments
sulthana shaik is now a member of PPMD Community
Jul 6, 2010
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Profile Information

Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
montreal

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