"From what my sons neurologist said it may very well help all of them . If it helps one category there is no reason to believe it wont work for the others . That was a comment he made about 6 months ago at our appointment .
My family and I live in Florida near Tampa and I have been unsuccessful finding any fundraisers or events near us . I would like to start an event if there isnt any . Can anyone tell me if you know of things in Florida or where to find such info ? Thanks
I am a happy wife of 16 years and a proud mother of two . I am an aethitician not employed at this time . Im enjoying being a mom right now .
About my family:
My husbands name is Joe and he is a Manager of a popular supermarket chain here in Florida where we live . Our beautiful daughter Jordan is 12 going in Middle school soon . Our loving son Joey is almost 7 and is going to be in first grade . Joey has recently been diagnsed with Duchennes Muscular Dystrophy .
Name(s) of child(ren)/individual(s) with Duchenne:
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: firstname.lastname@example.org or (513) 765-9416
Please dont apologize Im not on here much either . Hope your son had a great Birthday . We went to our first walk on Dec. 6 and it was great . Im still hoping to find or create some events here close to our home in New Port Richey because its not always easy for everyone to travel with such busy lives . How is your son doing if I may ask ? Ive been trying to get Joey in the upcoming Exon Skip trial but so far he doesnt qualify but there will be more oppertunities coming up .
We have a few fundraisers here in Tallahasse. There is a baseball game between the firefighters that raise money and can't member who else. We also have the boot collection every year. And of course the local MDA telethon.