I have Duchenne MD, im 32. I love life even though its a challenge. I recently moved out of home & am now living in a house were I receive 24 hour a day care. I love helping others so if you any questions about my own experience with DMD please send me a message or if just need someone to chat to & listen. I also use Skype so if want to chat just look me up.
About my family:
I have a brother with DMD as well. Scott is 34. I have two wonderfully supportive parents, along with my sister Kim, her husband Ian and my niece Caitlin who is 4.
Name(s) of child(ren)/individual(s) with Duchenne:
Daniel Harry, Scott Harry
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
Comment Wall (5 comments)
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you look so active and quite independant! I admire your strenght!
Do you work ? My son is going to be 8 in october, I see him struggling everyday while he is loosing muscle strenght as time goes by.. I fear the day he will lose mobility and not understand what is happening to him. I hope my husband and I will be strong enough and persuasive to ease and accept the disease as he grows up. When I look at you I have hope, thank you. Also, I am interested to know what you went through from the beginning to now, treatments, symptoms, .. I'm sorry you must be tired telling the same story again and again (maybe you can cut and paste from an old message ?) but it is very important for me to know what you have been through, it will make me realize wether we are missing a treatment or anything... We live in a small island and I am aware that we do not have the best conditions for our son's follow up treatment! take care and waiting to read you soon! xMichele
Hi Daniel, thanks for your offer to answer our questions ( there are so many!) I just wanted to ask you if you have always taken steroids or any other medication? my boys Tommy (9) and Danny (5) take prednisolone but I have doubts about it. Also how were things at school for you? tommy is having a lot of problems with kids saying nasty things, he is very sensitive and I wish I could help him to know how to handle it.Thanks so much for your time , i really appreciate it .x
You sent me a message a few months ago through facebook, but due to the hectic life with 2 preschoolers and a newborn, I totally overlooked sending you a reply. I have to say, I was both sad and overjoyed to receive your email. Sad that I (and you) should both be affected by DMD to even have something in common, and overjoyed that you seem so happy and positive about your life.
Thank you so much for your words of hope and encouragement. Almost every day, I get sad thinking of what my son will go through as the years go by, but your lovely email gave me such hope that he will be happy. As parents, all we want is for our children to be happy. I am glad to hear that you are happy - you are an inspiration to me, just like my son is.
My husband is organising a bike ride from Sydney to Melbourne, as you already know. Our website is www.tourduchenne.com. The name was my idea - at least I managed to have some input in the ride, he he. Let others know about it, as the more awareness and money we raise, the sooner we will find a cure! People don't consider DMD to be a mainstream disease - they are most certainly ignorant of how many boys and families are affected by it. Most people seem to think James will "get better" - it makes me even more upset when they ask if he is okay now or if his "MS" is just a "mild form" - why do people get Muscular Dystrophy and Multiple Schlerosis mixed up?
Anyway, had my vent. Sorry to burden you with it.
Once again, thank you so much for your email. It meant a lot to both me and my husband.
Hi Daniel ! We have never met before but since my son Samuel's diagnosis with DMD 3 years ago, I have discovered that I have many connections to you & your family.
The first time we heard your name was the day after Samuel was diagnosed (he was 4 at the time) & we went to tell our eldest son's teacher the news. She knew instantly that it was Duchenne & then told us that she had taught you &/or Scott & still remained a family friend of yours ... Lyn McDade. Next my mother's friend said that she was (may still be ?) one of your carers ... Kate Pie. Another friend of my mother's also is a friend of your parents ... Denise Ker. I got to meet your Mum at a DMD coffee morning & my mother has since had lunch with her & got to know her as well. The latest connection was during a staff meeting at my sons' school about a month ago. Our PT & OT were doing a presentation on DMD to broaden the staff's understanding & showed a short video that features you using a cough assist machine with Helen Posselt ... the teacher beside me said "that looks like Daniel Harry" ... I asked if he knew you & he said he went to school with you and/or Scott ... Rob Waters ~ talk about a small world hey ! It seems we are destined to cross paths sometime.
Daniel these past 3 years it has been & continues to be uplifting for me to think of you & Scott ... it is obvious to me that both of you have lived your lives with bravery & determination & have thus defied the odds of your prognosis. Thank you for being such inspirational role models to us parents & to our sons. Some day soon I hope we can all meet you in person.