Hi, im jo mum to my little man Liam who is 9 years old and diagnoised with DMD at age 6 he also has to older brothers and a younger sister.
About my family:
We are a loving family, enjoy being outdoors, camping and spending lots of time with our family, but of late havent been out so much Liams condition has been very agressive and hes not coping with that so well. He is full cares now for bath, shower and dressing he can still feed himself but loves to use fingers as he cant manage a knife and fork so well. Liam just got a new wheelchair as the one he got when he first stopped walking was not suited. Its a fab chair with a bit of neat technology on it for him to use and can tilt so that if hes really tired he can lean it back as hes not holding his head up so well he also had a head support added hes really enjoying his new chair. My other two older boys help me alot when taking care of liam which i am so gratefull for and the still get to spend lots of time with their friends which is good. The boys seem to be dealing with Liam being unwell really good. Gary is step dad to the three boys but is Lydias dad although he treats the boys as if the were his own. Jason the boys dad has the boys go and stay with him fortnightly and hes a great dad to the boys. We have really pulled together as a family since Liam was diagnoised Ill never ever forget the day the doctors told me it broke my world but with the strength from my family, friends and Liams school we have come through the other side and just living each day as it comes.
Name(s) of child(ren)/individual(s) with Duchenne:
Go to www.towardsabrighterfuture.org.au for news of our national neuromuscular conference in Sydney, Feb 26-27, 2010. Draft program is online now, including concurrent breakout sessions. Share this update with affected persons and family as this is a strong international program of presenters. See you there!