"I think you are praying for what every parent prays for , md or not. I have 2 sons with md. I lost one of them after he fell and broke his leg. He developed a blood clot and had a heart attack. The medical examiner listed his death as related to md.…"
"Eventually it becomes safety over everything else. His back pain and leg pain is obviously not good either. When my oldest started in his chair we made it out as a cool thing and the other kids would ask him for rides.lol Eventually, everyone…"
"keep him active. This whole thing is completely exhausting ,but, make a conserted effort to do more than before.
go on walks.. go to the park.. go to see a show...get out of the house...have movie night. Make this leg thing an…"
"My sons both have DMD. found out Jonah had it in 2008 and Carter in 2012. I remember watching a football game that and as the leaves fell off the trees I could literally the weight of them and was feeling buried with them. In the real world I…"
"I'm sorry. I hope it isn't Duchenne , but from what you're saying it sounds like it. Your story is much like mine and I'm sure much like most in the community. My oldest, Jonah, did the same things i.e. slow up the steps,…"
"Bob, So sorry to hear about Jonah. It strengthens my resolve to continue to do things with my sons while they are able, since you never know when the unexpected will happen. Our thoughts are with you and your family.
"If you dont mind my asking what were the heart issues your son had. My son is 8 years old and he has left ventricle hypotrophy. Every time i read something like this it makes me scared knowing whats going on with my lil one,"
"I want to thank everyone for their thoughts and prayers. It is very hard to put a smile on my face, but my wife and I will try and keep the holidays as normal as possible for my other son. Merry Christmas to everyone and a BIG CHEER to finding…"
"Bob, I know you don't know me, but I want you to know I'm thinking of you and your family right now during the holidays. I'm sure you've got lots of happy memories of Jonah that you can call upon right now and remember him as a…"