It breaks my heart to know that things are so bad for our boys. I have seen where 5 little boys have lost their battle with dmd. It is scarey to think about that one day its going to be our little boys. My son as most of you know is 7 years old. He is a happy little boy. But far from healthy we have had heart problems come up and liver problems come up. He is loosing his strength by the day that keeps him walking and i am scared to death. You never know how scared you are until you get a call from the school saying your son has passed out and isnt responding thats when you really start to think and hope and pray that you will get there in time and that this isnt the end. What do we do to make it thru the night with all the fear we are feeling.

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danielle

how scary for you and your family.  it is incidents like this that make you question life, your faith, decisions, etc.  I hope your son has recovered and will be able to return to school soon.

my son is also 7 and he is loosing his strength by the day- I too am very scared.  It helps to know that we are all part of the DMD family and have the same fears, dreams, and hopes.  I feel you pain and strength as we watch our boys change. 

There has been many lives lost recently and it just breaks my heart.......   

Dear Danielle and Evelyn,

I am the father of two young men who have DMD.  I recently lost Matthew at age 20 and Patrick is well at age 19.  Matthew was very active and a happy young man with many friends.  Patrick also is busy and has a great network of friends.

The best advice I can offer is to keep your sons busy, help them to get involved, give them goals and take care of yourselves.  

My sons participated in many school and non-school activities which helped increase their circle of friends.  We make our house the place where all are welcome knowing most families don't have an accessible home.  My sons' friends would come to play video games, go for walks near the river where we live, eat and just hang out.  It doesn't have to be structured, just welcoming.  Encouraging the boys to participate in school activities is also important as many are a bit hesitant, but once they get involved they enjoy being part of the group.

I also urge you to take part in activities that give your some respite.  Many people take Yoga, ride a bike, run or meet other parents for lunch or coffee on a regular basis.  Doing something just for you is important to keep stay emotionally well and be a better parent as you'll have some peace of mind.  It is also useful for parents to do things as couples to strengthen their relationship as caring for someone adds additional stress.

I wish you both the best and know that things can go well.  Take one day at a time.

Peace,

Brian

This happened last school year in like january. Since then we have had heart problems ( they say he has LVH) which if you are like me you are saying what the hell is that and why would my 7 year old have if. Well it is where the left side of his heart the wall is getting bigger and making it harder to pump the blood to his body. Then we found out that his liver enzymes are way way to high and they have run tests on him and all i can do is wait. Then we find out yesterday the insurance company denied him his wheelchair again and the company we were ordering thru has closed his case. So now i have to start over and i am running low on patients. I am at my wits end and i have no where to turn all i can do is pretend this doesnt scare the hell out of me and that everything is going to be okay. But like i said in my blog "a mom and her son" at the end of the day we both shed tears.

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