My name is Heidi and my son Josh is 12 yrs. old and has DMD. I am a single mother who is self employed so that I may be available for Josh when he needs me.
About my family:
Josh and I live in Valrico Florida. We are learning together how to take care of each other as the wheelchair and losing the walking ability has come to play. My parents Don and Ilona Peterson are a great help to us. Also his grandparents Sandy and Otto Kruger. His father Scott comes over and hangs out with him in his room watching movies and playing PS2 games.
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
lol...i am sitting here with my morning coffee...kids are upstairs doing who knows what...I look at your son, and his way about life and it gives me hope for my boys. He looks like he takes this very well...us moms on the other hand...shit...Your son sure is a cutie...Take care!! Enjoy the hollidays.
We are in Canada, so the typical for the hollidays is to snowmobile out into the cabin in the woods....and open presents. For the first time, I will cherish these memories like i have never before. I want you to do the same.
Take care momma!!! xoxo