My name is Margarita, I live in Ukraine, Kirovograd. I have a son, who is ill with Duchenne. He is now 9,5 years old. I would like to communicate with the American parents on the skype: alina 1998831. My email: email@example.com. Please, call me I will be waite. I am sorry, I lern an English only, so I do mistakes.
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
Kevin, So glad that you sent me this link. I keep a picture of your family in the kitchen, I pray daily for healing for Zachary and for you to have the strength to keep fighting and working toward a cure.
Hi Kevin - We're in Florida too. Where's Valrico? We are in St. Augustine. I am trying to get my husband involved in PPMD. Our son Ryan was diagnosed with DMD in May. He will be three at the end of this month.
Just stopping by your page...I like to see what dads are up to (relay the message to my hubby for encouragement). Looks like you and Zachary have an awesome relationship! LOVE, LOVE, LOVE Batman and Robin!!! Oh, and we have a Reagan too! She'll be 10 in January.
You are so great to offer to talk to him. I think the dad's need to talk to-it seems just a lot of us mom's more so than Dad's connect here. But I love the idea of getting Dad's together. Thank you so much for the idea. Right now, I am going to start a group for Dad's only and we will get you all gathered there. It might help you to build a group of men that way.
Welcome, Kevin! Good for you! Get those dads involved. My husband never gets on my computer much so he will be one that would be hard to get on here-he works so many hours, he never has enough time. I will show him your page!