Started this discussion. Last reply by Brooke Lyons Jun 18, 2013. 4 Replies 0 Favorites
I am so terribly confused...actually I am running the whole gamut of emotions. Part of me would like to stay in a bliss of denial yet I know that I can not. How have you moved forward and fought…Continue
Started Jun 10, 2013 0 Replies 0 Favorites
My son is 14 months old and we just got his diagnosis confirmed last week. The doctor is saying a cautious Beckers diagnosis/borderline Duchenne? Has anyone had that or a similar deletion? How are…Continue
Started this discussion. Last reply by Andrea Cleary May 31, 2013. 5 Replies 0 Favorites
PLEASE help. I will try to make this short. My son is 14 months old had has been developmentally delayed since he was about 9 months old(when we first noticed something was not "quite right"). HE…Continue
Posted on June 7, 2013 at 2:33pm 3 Comments 0 Favorites
My son Ryker is 14 months old. I just spoke with his neuromuscular specialist and she confirmed via his DNA and chromosome microarray that he has exon deletions 3-30 but the DNA test is showing that he is making minescule amounts of distrophin so she is cautiously diagnosing him with becker's but wants us to understand that by the time he is 5-7 it could change to Duchennes since he has such a large deletion and he could stop producing the small amount that he is now. She said that it is…
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We wanted to participate in thr trials. Sent mail to them regarding this but received no reply
Can you plz help me out on this.
I know it's difficult to participate from India but do they have any collaboration with hospital from India so we can be a part of study
We are actually going to the PPMD conference in two weeks. I hight recommend going if you get the chance. It is my recharge for the year.
Please keep in touch.
StaffPPMD said…
Brooke -- We'd like to connect you with our Genetic Counselor, Ann Martin regarding the questions you have about your sons diagnosis. Please feel free to contact Ann at Ann@parentprojectmd.org or 201-937-1408.