Marian, your 3 kids look so sweet (I love the little one's hair). I think we are getting the snow yesterday and today. Yes, California would look good this time of year, huh? We are off to Florida in April, so won't complain this year.
I am sorry to say; I am looking for 3 more boys! I believe I There is a mom that just may let me know if they will participate. So, that leaves me with 2 short of finishing. Hoping that moms will be calling me soon. Have to keep the hope. Right? other than that life is great and I am blessed! Know anyone in Ill.? : )
Both my parents are alive and still married! They have beat the odds of having to lose children and stay married. Many couples grow apart after a death of a child. My parents have lost 4 children. I am the middle child in the family. My brother Billy (my best friend) died when he was 19 and Steven @ 22. My sister was killed by a drunk driver and the eldest boy passed from SIDS. They are strong in thier marriage and still go dancing 3 to 4 times a week! And they flirt with each other. I have been and blessed with them. Not sure why I am sharing all this; feel compeled for some reason. Thanks for listening. Hoping you have a wonderful holiday! Donna
Your wonderful family touched my heart. What beautiful boys you have! (Don't tell I used that word) I have permission to collect data from Illinois. I sure wish I could have your sons participate. That is the best thing about my research I get to meet precious boys. And we draw! I appreciate your williness to help me. My goal is to give boys with DMD a voice. Thanks for the smiles; I especially like the shoveling pictures. Best regards, Donna
We see Dr Tarnopolsky at McMaster in Hamilton.
So far Josh has been managing to get himself up the bus stairs. The school is watching him everyday to see if he needs help. He wants to do it himself and says if he needs help he'll ask. I want to help him with everything but I think letting him struggle a bit and succeed is important too.
I won't give up, but some days are the toughest. Most guys arent wallowing even though they dont see the possibility of a cure, loads go out, drink and live life to the full. Better care is what i'm fighting for while science does its thing looking for a treatment/cure. Alot of us would like a wife and kids and stuff, but its hard going. No-one seems interested in me in the love department, but who knows what tomorrow holds. Happy early birthday! by the way.
I know of loads of adult guys, ventilators, trachs, cough assits, proper care are making us live longer but 21 to 30+ isn't really that "old". Sadly younger kids are dying too thats why we all keep the fight up to end duchenne
I think in my opinion its good for you too stay within the dmd age group that you can relate too and work your way up to seeing the older ones. It is well worth meeting us oldies :) The only thing we have is hope, and that gives us detirmination to fight and get that treatment, please keep up the hope :)
No ive never been to Canada, I did try to learn french once though in school lol. Went to florida in 1993, had a blast as a 9 year old. Healthcare for dmd in the uk is an awful postcode lottery, in Wales it's terrible, no specialists in neuromuscular diseases, no physio after you leave school, no monitoring of breathing/heart until you become very ill, spinal surgery not as prevalent as it should be, knowledge on Steriods is very low, I didn't know about that until i was 23 off websites, never offered them. Life expectancy is 19. In newcastle 100's of miles away they have better care with life expectancy of 30+. I'm campaigning to change this though with the great help from action duchenne(uk's ppmd).
I accepted your add on Facebook, thx, yup we have simpsons I love it.
Thanks for making contact. We did get the results back and my 2-year olds ck was 266, which is not indicative of DMD, but was a little higher than range....so we'll do it again in the future. My husband and I waited over a hear to get the little guy tested after we found out about Jake. We just couldn't make ourselves find out. The waiting was really hard, but day by day is how we proceed these days. How are your boys doing?
Vinyl's worked for us, we have non slip vinyl in the kitchen and bathroom, and it seems pretty hardwearing. Alot of people recommend either real wood floors or hardwearing laminate. I'm always worried that my wheels could slip on wood though, for instance my overhead hoist sling's need to be pulled under my legs and a good pull will move the whole chair out of position. We have carpet, but theres always a worry about dirty wheels but I don't go out much so not a prob with me.
Thank you for your great comments about my website and blog. I'm just basically flying the flag for the "older" generation so to speak. We are a philisophical bunch, from my correspondence and from what I've witnessed alot of us have given up on a cure. I was one of them but I said "no" i'm not going to give in so i'm even more detirmined to get the scientists working alot more on the adults who have made it past childhood. Theres more complex research ahead but I hope I survive to see it, if i'm realistic then I haven't got much hope on getting into my thirties, but i will fight.
I don't go to the conference in the UK because london is too far for me travel i'm not up to a 4-5 hour drive. I'm hopeful a conference might come to Wales (where i live) in the future so lets hope so :)