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...
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Hi. I just joined the PPMD community and I am going through all of the members to see how many I know and where they are all from. I saw you are from Fort Walton Beach and I have been told that Destin, Florida has a beautiful beach. Justin, my grandson, has DMD and loves the beach. We have always gone to the beach at Port Aransas, TX., but we would like to go to another beach. Justin is 11 and is getting more contractures and having a harder time in walking and balancing, so I so wanted to go to a new beach for him to enjoy. Could you give me some information about Destin beach and what activities would be good for Justin to do? Would you know of a condo (not very expensive) that has space for a family of 11 to stay and is on the beach?