If you have a child with Duchenne Muscular Dystrophy how are things going for you and your son?

Iris - posted on 05/05/2013

My son is now 11 years old and was diagnosed with DMD at the age of 6. He is in a wheelchair and goind to school. Amidst all the tears and pain, I remain positive and thank God everyday that my son is with me. Just take life one day at a time, make the most of it. My strenght comes from the Lord. There are a lot of information on the Muscular Dystrophy and parentproject websites. God Bless You and your family.

Lisa - posted on 03/20/2013

I feel your pain my name is Lisa I have a son that is also 8 years old with dmd and I had a brother with same disease my heart is crushed but what makes even worst is that his father died when my son was 2 yrs old and now I am a single parent with nobody there to be supportive it is just me and my son I did have a best friend of 30 years she just passed away in October now I am all alone what keeps me going is my son I am all he has I take one day at a time and hope and pray for a cure I am so glad you have a big family like that.

Kimberly - posted on 11/17/2011

Hi I have four children(2 daughters, and 2 sons) My youngest son who is 8 years old has Duchenne's. We have been as well as I believe anyone could with a boy with Duchenne's. This year has been the hardest so far with him getting weaker and not able to walk as well as before. He even realized it himself this school year that he just couldn't do the play ground anymore. He is such a sweet, bright boy to have around, but he is starting to ask more questions about why him. It is sad to watch him hurt over these things I have no control over. Watching his progress this year so far has been very painful and my heart just breaks when he looks up at me and ask me to make it go away and fix it so he doesn't lose his legs. I am thankful to have my husband and other children who all support me through these times, but it is still hard. My family has had a couple really hard years with losing our jobs, home and car. We moved with family and still live in two bedrooms (about 700sq. feet) for 6 people. This place is so small and with our son with DMD getting weaker I don't know what we will do about room for a wheelchair, more a less a van. These have been hard times on top of dealing with this horrible disease. I'm so proud of who our boy is and how well he takes it all. He has already taught me so much and I thank God everyday I have with him. He is my little angel. God Bless to all of you who live with DMD in your lifes.

Christine - posted on 08/16/2011

Hugs Elena - where do you live? It's good to cry and let it all out. I'm here to listen to you any time. Take good care of yourself now. xx

Christine - posted on 08/16/2011

My son is 15 in September.
His spine is at 20 degrees and they say he can't have the operation and that a spinal jacket/brace would not be good for him. I am scared and confused about managing his future care now!
He got Sudden onset dilated cardiomyopathy very suddenly - we were told he had just 1 year left to live - that was this time 2 years ago!
It was the bad timing of it all really - his school was being closed, it was the holidays, no one knew what was wrong until it was almost too late, had huge teething problems with new school - took 18 months to get toileting programme sorted, problems with school transport, dining tables being totally unsuitable and the class they put him in.
2 years of hell and now things are good but it's taken a lot out of me and have had to fight for my marriage too!
Confused dot com has nothing on me!!!

Debbie - posted on 06/21/2011

hi my son is alex 13 wiv dmd, doin really well atm x

Elena - posted on 06/03/2011

Hi, my son was diagnosed at the age of 6 but he is 13 years old now. The first years where the hardest. I was always crying and sad, but for me and him things got better when we finally relised that this is how things are and there is nothing we can do to change it. When I did, wich was about one and a half year ago when my son was 12 and wheelchair bound things got better. He is getting his first breathing machine on monday and we are glad becouse then he will feel better. It was difficult and I was always worried that he would fall and hurt himself when he was walking and that happend many times. Now we both feel better and safe :-) Just take one day at a time and you know...its always ok to cry and feel sad, it is absolutly normal. I wish that I could have dmd moms near me to talk and share, but in my country there are only five boys with dmd (thank god) and they are spread over the country. I sometimes feel like nobody understands and I feel alone. But like I always say, staying positive is the best drug. Hugs.. :-) Lena

Jill - posted on 03/06/2011

hiya my son is 6 we were told he had DMD last may,hes doing well x

Amanda - posted on 03/02/2011

I have a son with dmd. My little boys name is Riley. He was diagnosed at 15 weeks and is now 11mo. He is doing great! He is a little bit delayed, he cant go from laying down to sitting up and does not crawl but loves for us to hold his hand and let him stand up. Yes it is hard dealing with but...you do.

Amanda - posted on 03/02/2011

I have a son with dmd. My little boys name is Riley. He was diagnosed at 15 weeks and is now 11mo. He is doing great! He is a little bit delayed, he cant go from laying down to sitting up and does not crawl but loves for us to hold his hand and let him stand up. Yes it is hard dealing with but...you do.

Nicole - posted on 04/14/2010

Teresa please don't let your son see you cry..because my son seen me once and he thought he did something wrong and thats why I was crying. It's going to be a long and ruff road I won't lie to you. My son is 16 now and he had an appointment today and I have done nothing but cry since we left. It will get worse and harder. My advise to you is get someone to talk to, It helps alittle. Therapy is the key for you're son. I used to have mine push my younger son while he was in the stroller and it helped some what with the pain and he actually was able to walk better pushing that. I hate what this crap does to our kids but they are the ones that are suffering and it's hard on everyone. My son went to the doctors today and asked the doctor to amputate his legs so he could get fake ones so he can walk again..it broke my heart because my son has been in a wheelchair since he was 10 and now at 16 he just wants to go to a school dance and dance with a girl.
Keep your head up...I wish you and you're son the best ♥ and if you would like to chat just send me a message!

Nicole - posted on 04/14/2010

Hi ladies, My son is 16 now..we have been threw everything you have mentioned..the anger will let up some..my son is all about his video games too and will not let anyone mess with them! He plays them morniong and night but he looks at it like a kid who can run fast is that childs specialty and to my son his specialty is playing those games and winning at everyone of them. He never really got mad at his brother or resented him because he can walk or run, and by the grace of god we never had to deal with the bullies or people picking on him. But at 13 he got to the point where he would not want to leave the house because of people staring at him, but now I can get him to go to the movies or to the movie store to get new games but that's it.

Julie - posted on 10/22/2009

my son Timothy who was diagnosed at age 5 was doing well up until the present. He is starting to show anger and is not always happy with the way things are going for him. He loves his power chair but gets frustrated when he needs someone to help him for he was usually a very independant child who likes doing things on his own however, cant anymore. He also is a litttle resentful of his brother who can walk, jump, hop, dance and do things he cant do. And what doesn't help is the bullying people making fun of him, etc...but he's content when playing video games and drawing. I am adding you.

Teresa - posted on 06/25/2009

hi i have a little boy called kieron he will be 5 in aug he was dignosed with dmd in oct 08.it so sad watching my little boy suffering cos he in lots of pain with his legs and he gits so stressed coz he cant do the things his brother who is 3 can do he still cant ride a bike witch really upsets him and he walking is getting worse every day.it still hurts when i watch him every day most nights i still cry my self to sleep at night thinking about him and what the future mite be like .we found out the orther week that i am not a carrier that it was a miss hap when he was concieved witch gave me mixed feelings coz if i was a carrier then there is a reason why he got dmd but im not so it is hard to understand why he got it.

Teresa - posted on 06/25/2009

hi i have a little boy called kieron he will be 5 in aug he was dignosed with dmd in oct 08.it so sad watching my little boy suffering cos he in lots of pain with his legs and he gits so stressed coz he cant do the things his brother who is 3 can do he still cant ride a bike witch really upsets him and he walking is getting worse every day.it still hurts when i watch him every day most nights i still cry my self to sleep at night thinking about him and what the future mite be like .we found out the orther week that i am not a carrier that it was a miss hap when he was concieved witch gave me mixed feelings coz if i was a carrier then there is a reason why he got dmd but im not so it is hard to understand why he got it.