There will be some fundraisers coming up for my grandsons soon. My oldest grandson is now 4 years old. He doesn't know there is anything wrong with him, and so far, has not asked questions or indicated that he feels different from the other boys. However, if he attends a fundraiser for himself and his little brother, I'm sure he is going to be aware that this is all about them. I don't think it would be a good time to start answering questions while he's at the fundraiser, but since, he's never questioned anything, do his Mom and Dad bring it up before hand and explain things to him. Would it just be best to have him not attend. I would certainly like to know if other parents have run into this same situation where there child has attended fundraisers in their honor before they were aware of their disorder and before they started asking questions about it.

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When Christopher was a little guy, we attended fundraisers for MDA. He was a local, then state ambassador. He was diagnosed when he was 3 years old and we told him age appropriate information in different stages. I can't remember how old he was when we began talking to him about it. I think it was when it was obvious that he got tired from walking, or couldn't do the things his little friends could do. We just explained that his muscles weren't working the way they should and that the doctors were working on a way to help them. We didn't have him attend any events until he knew about his muscles. I wouldn't recommend having your grandson attend the fundraiser if he doesn't know that there is something different. I think it would be very confusing for him. More than likely, someone would say something that would make him wonder what was going on. Good luck with whatever you all decide to do and I hope that the fundraiser does well! Tracie
Thank you for your thoughts on this matter and for your well wishes on our fundraiser. Terry
Well, my son was a State Poster Child in SC and here in ME and a Goodwill Ambassador yrs. afterwards and still is a older ambassador here in ME.

You know what when the boys attend these fudnraisers at this early age, they really don't comprehend what it is for most of the time, they just enjoy the attention and any gifts that they receive at these fundraisers and t hen they usually are off running and playing with any other kids who attend the fundraiser that is taking place...they are too busy playing and it revolves back to the parents ( either them speaking or people coming up to them and talking )......it has never hurt any of the boys I have known here in Maine to attend any of the fundraisers supported or sponsored by MDA or any other organization supporting our cause! They all have grown to be very well rounded mature young guys, they are depressed they knew from when they were little, but, reality is they don't at this young age comprehend what DMD really means to them as we adults know it. Being honest is the best way.....example look at all the kids that have cancer ( their families feel the same way we do, it isn't the name of the illness that steals many chikdren away from their families, it is just the terminal illness itself that is taking our special kids from us way too early ), these kids know, how can they not being in the childrens cancer treatment centers. Children do not comprehend death and dying as we adults know so well, the pain it causes families.......just explain it to him in his age appropriate terms and at his age he'll probably say okay and just go off and play afterwards. There is one boy that we know that his mom never told him till he was about 10/12 yrs. old and I can't for the life of me not understand how he didn't know anything, she asked me how old Adam was when I told him and I said he has always known from the beginning ( meaning he didn't understand having DMD like you and I know it ), this young teenager now is so, mean to his mom, disrespectful to her, like he is punishing her now, he wasn't like this to her before he found out......being honest from the get go......I know people want to protect their sons, even parents with healthy kids want to protect their kids from all the harms in the world, but, that isn't helping them by doing so, and it doesn't help our boys by protecting them from the truth. I just remember my son and the other boys having fun at these fundraisers, thats all they had fun and special memories were made and new freindships started. My son is the oldest of the boys that learned they had DMD back in the late 80's early 90's, we all went to the same fundraisers, we all couldn't wait to see each other at clinic visits and the telethon each yr. ( broadcast thru our local tv news stations ), 3 boys have since passed, some of the younger boys aren't doing as well as my 23 yr. old son.....but, these boys have always known!
They just enjoyed the fundraisers.....gave them their time to shine and to allow people to enjoy them too while us parents are spreading awareness and educating the public and helping raise funds for our No.#1 cause OUR SONS!!!!!!

God Bless,
Cheryl

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