It has been almost 6 years since we joined the PPMD community. We are very excited about the new developments in possible treatment for the future. We are active in helping raise awareness of Duchenne. Our license plate says CUREDMD which is a great way to share what DMD is with those who ask about what our license plate says.
About my family:
I have been married to my beautiful wife Jennifer for 19 years, my daughter Kaitlyn is 13 -and Braden is 9. Braden was diagnosed almost 6 years ago. He is still mobile, but uses a manual mobility chair for long distances.
Name(s) of child(ren)/individual(s) with Duchenne:
Hi Brent, Ryan was diagnosed in May of 08. All of his life he has had delay issues so we new something wasnt right. When he was first diagnosed my world was shattered as you can imagine. but slowly over time I am realizing there is a lot of hope out there. One of the toughest things for us right now is his inability to speak. Its hard enough knowing what he has to face in the future but a lack of communication just makes it worse. Ryan is a smart, happy little guy and I take comfort in that. I wish you and your family all the best!!!
I am sorry to hear about your son and hope you find the support you need within your family and community. This is a place I hope you find of value and support to help you.
Please let me know if I can help in any way.
The one thing I find, if you can do this, is to get involved with advocating for research, education and awareness. PPMD gives you this opportunity every year. Right now we are working on getting the MD Care bill re-authorized. It is HR5265 for the House adn S.2618 for the Senate. You can confirm those bill numbers in the Discussion forum under Advocacy. You can also call Ryan at PPMD in New Jersey and he is a wonderful person to offer you information on this as well as support!
Advocating is the one way I feel I can fight this condition and to help bring about change for all our children.
Take care and please let me know if I can be of help.
Do you have two children with DMD? I can only speak for having an only child diagnosed with BMD. Upon Jared's diagnosis, I jumped right in to help MDA with fundraising and supporting other families. Now thankfully there is an MDA Parent Support Group in our area and PPMD Community. On Jared's first anniversary of diagnosis, I pulled him out of school and we went and celebrated so it would be more positive for him. I can honestly say the first year is hard, but I am more settled with things now since it all seems old hat. But I know as the disease progresses, it will be tough each step of the way. It already is hard each time he complains of pain and having a hard time walking but we will take it a step at a time and try to remember each moment and not take anything for granted. There is hope each and every day.