I was hoping someone could give me some feedback on MDA summer camp. My son is six, almost 7 and is currently doing really well physically. We haven't sent him to camp prior to now, really because WE weren't ready for it but in talking to our MDA representative, she says all the kids have the time of their lives, it's one week where they don't have to struggle to keep up with everyone else and frankly, that it's about him and not me! I'm worried (well, that's just what I do!) for a few reasons, one is that he won't want to go and stay overnight (she tells me that NO kid is still home sick after day one!) and two that he will start to connect the dots of the potential of having to use a wheel chair which he has no idea about at this point. I've kind of reluctantly signed him up but was hoping that someone with younger kids that have gone could share their experience with me.
Thanks for any feedback!

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Hi Linda,

My son went last year for the first time and had a fantastic time. He was also 7, and we had the same concerns that you have. For about a year now he has been using a manual wheelchair to get from place to place, but it was the first place he had seen so many power wheelchairs. We're still grappling with the idea of a power wheelchair. Our perspective has been that using a power wheelchair is a benchmark that we're not crazy about getting to. His perspective is that it is cool and it will help him out (I am trying to come around, but I'm worried about loss of function due to too much reliance on a chair).

The whole way up to camp he said he did not want to go. We said that was fine, but we wanted to go and see it anyway. After being there for half an hour he was sold (the squirt-guns did it). He did miss us, but had such a good time that quite often he mentions that he wants to go next year.

Hi Linda,
We are sending our son for the first time this year. I know your anxiety. We went to visit camp last year and Xavier really enjoyed being able to see the activities they offer. That sold him on going. Being a nervous mom, I hand selected his counselor, which is something you can do if there is someone you know that can be his volunteer. Xavier's Aunt, my SIL, has always had a very special relationship with him, she lives in TN and just got engaged to be married a month after camp. It has always been her dream to go to camp with him as soon as he was diagnosed and it was discussed he would go to camp some day. She knows Xavier really well and I know that he will have a blast just being able to hang with Aunt Suzie for a week, being at camp together will be an added bounus and a special memory only they get to share. Perhaps you have a special someone that he could go to camp with?
I have talked to other parents about the whole "putting it all together thing" and from what I have learned it's not really an issue for the boys, only us parents. They really don't put it all together and honestly, they enjoy being among real "peers" for the week. I wish you good luck!
Hi Linda. I am sending Austin for the first time this year. Last year he was not ready. We have orientation next Saturday. I think one thing that is really helping us both to prepare is that he will know another boy that is going. We met him and his family a few months ago, and they get along really well. Maybe if you can find others around you and get to know them, it will make you and your son feel more comfortable about him going.

As for the wheelchair.... The first time Austin and I discussed others with MD, I explained to him that there will be others that will have different types of MD than him. That some people may have chairs and not be able to walk on their own. And some may be able to do more than him and get around better. I explained that everyone is different, MD or not. It's possible that some of them will be about the same.
It seemed to relieve some of his questions for a while. Austin made the choice to get a chair at 9yrs. He realized how much easier things would be at school and such. He uses it everyday at school, outside the classroom and when he has to walk a long distance. He does not use the chair in the classroom or home at all yet. Just because they have the chair does not mean they have to depend on it immediatly.

Good luck!!!

We'll see how it goes!!!
Hey Linda,

He will LOVE it. My older son with Durchenne's is 10 and he's gone several times. He's also quite the "mama's boy" and I thought the same thing but he had so much fun that he would forget to call home. He never said anything about other people in the wheelchairs. I really think he just had so much fun. Rest assured....I personally think that if any child who doesn't go is missing out!
My son loves to go to MDA Camp and has been going since he was 8 years old (he is now 16). Unfortunately, MDA changed the cutoff age to go to camp from 21 down to 17 years old. My son was very upset about this and created a website to vent his sadness about this age change. If you go to the website, you will get to see many campers, counselors, family, friends postings about how much they enjoy MDA Camp. It might help to take a look at some of the responses to help ease your mind in sending your son to camp.


Thank you everyone, you have all helped me so much and relieved my mind (about this!) I signed him up! Thanks again!
ps: I've signed several petitions to raise the age for the MDA camp, is that making a difference?
Hi Linda,
Where are these petitions to sign for increasing the age for MDA camp? Joanne
Don't let your son miss another year of summer camp. My son Christopher comes out of his shell when it's camp time. I don't know what I'm going to do this year since he can't go no more. Your son will love camp and the MDA representative is right.

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