I endure. I worked for my family and got cna and care for oldest at home and probably made a lot of noise at times but we gave a good run,
About my family:
my oldest passed july 3 2008 he was born august 11, 1979. he lived at home, on his own, went to college though he never manage to finish he certain gave it a go.he went camping up until six years ago. he got his first motor chair at 12 and promptly wrecked in five days at camp. He graduated in 1997. he has three sibling one sister and two brothers up until last year both his brothers had stored cord blood.some say one day it may change the course of this disease. his only real hospital stay was from january3-july3, 2008.
Name(s) of child(ren)/individual(s) with Duchenne:
jay arthur wells II
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
south daytona 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,
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