Hi there! Thanks for the heads up!! I completely forgot about updating my profile...I know you're always there to keep me on the up and up!! lol We haven't gotten the softball schedule yet....I'm thinking it's in May some time. It's gonna be in the high 60's today.....I am SO ready for summer!!!
hey guys - i forgot to tell you - OHIO STATE is recruiting DMD boys for a trial - Owen does not qualify because he has 49 and 50 deletion - it is the 50 that knocked him out - Call Dr. Friedman if you want to see if Jack can participate ... mini dystrophin injections - that isall i know
My name is Lauren and my family lives in PA. In browsing the website, I saw that your son has the same deletions as our boys. We learned this summer that both Jake(age 5) and Ryan (age 21 mths) have Duchenne. Does your son take steroids? Jake has always had some trouble climbing, and cannot jump, but otherwise does ok so far. Looks like you have a great family there - take care!
I seen you and your little boy on the telethon today. You are very strong and I commend you and your family for all of the help and support you give to everyone. I am still new at this so I hope to get as actively involved as you are. Do you know much about PCT 124...Cade has a duplication of 45 so I dont think that this will help him, however it does sound promising...I will be callin probably this week to see about coming to a support group...
Hi Brian - Jack is the 3rd that I know of now (including Cole) with a deletion of 46-47. Cole just turned 9 on 8/3 and we are in the process of getting him a scooter too. He's had a manual chair for 1 1/2 yrs and doesn't really use it that much - mostly when we go to the zoo or something like that. We tried the 3-wheel scooters and I could just invision what you described Jack doing - so we are going to be getting one with 4-wheels. I figure I have enough gray hair already!
So how far is Broadview Heights from Cincinnati? Does Jack see Dr. Wong @ CCHMC? We'll be there for our annual visit the week of 11/10.