I am the grandmother to five of the most precious grandchildren on the face of the earth. My first is 10-year old Noah McRitchie, afflicted by Duchenne Muscular Dystrophy. I have been a member of Michigan Citizens for Stem Cell Research and Cures and hope to do more advocate work since I wish to retire from teaching soon. I am also a yoga instructor and massage therapist. Both come in handy with stretching Noah out.
About my family:
I have two daughters, Lisa Hughes, mother of Lauren and Jack, living in Virginia Beach, and Laura, mother of Noah, Paige, and Hannah, living in North Port , Florida.
Name(s) of child(ren)/individual(s) with Duchenne:
Grandson Noah McRitchie.
Age(s) of child(ren)/individual(s) with Duchenne:
North Port, Florida
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We have a little boy Diego, who is 5 with DMD and he takes Deflazacort (Calcort) - 12 mg daily. We just arrived to Disney in Orlando,Florida and realized that we left his medicine at home!!!!!! I understand he cannot be without Deflazacort more than 24 hours and Diego does not have medicine for tomorrow. By any chance, is your son using Deflazacort? If he is can we buy or borrow any from you?? We are willing to drive and go anywhere to get the medicine and we can replace within 10 days guaranteed. Sorry to bother you wiht this! but are trying to avoid major interruptions for the boys and extendended family due to this...
Thanks for your kind attention to this,
Here is my email and phone number: email@example.com or (513) 765-9416
About your question to find out if your grandson has a stop codon or not, you should ask someone at DuchenneConnect. They have genetic counselors available and will set up a phone appt with you. I've done this on a couple of occasions as well as had q's answered via e-mail. DuchenneConnect can be found via PPMD front page on the site. If you can't find it e-mail Kimberyl at PPMD or Ryan, they will direct you. Hope this helps!
We started Jake on the deflazacort at 6 with Dr. Biggar in Toronto, then switched to Dr. Wong about 2 years ago. There are really no decent docs in Detroit area either although Dr. McCormick at MDA in Farmington Hills is pretty good. She took over from the old school guys who were horrible. Nice thing about cinci is you get all your specialist appts over with at one time and they know so much about dmd.
Karen - I, too, am a grandmother of wonderful grandchildren, 2 girls (4 & 5) and two boys (7 & 8), both of who have DMD.
We too, were at dead ends as to treatment until my daughter-in-law got in touch with a dr. in Lubbock, Texas. I wanted her to contact Dr. Wong, but she opted for this dr. first. We had been to Dallas to no avail and there is nothing here in Amarillo, Texas. The Lubbock dr. put Peyton, who is still kind of ambulatory, on Prednisone, and if that doesn't show results, I am going to urge them to try Deflazacort, which many on PPMD say is wonderful. Being the Grandmother, all I can do is keep urging son and daughter-in-law to do more, more, more to help the boys. Noah, the 7 year old is not showing the signs like Peyton, the 8 year old, but both need to be`given the best possible chances, as do all the children with DMD. I hear Dr. Wong is wonderful, and hope you get in touch with her. Jean Burns
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