Hi, newbie.

[AbbiS]

Does anyone else have a child with Duchenne Muscular Dystrophy?

Hi AbbiS.

I don't have a child with Duchenne Muscular Dystrophy, but wanted to welcome you to the board and bump your post.

Hello from me too

Thank you Moosemama and nothinginthefridge. I've only just joined mumsnet, for a change of scenery from the forums and groups I've used over the past six years. I thought this would be worth a look as I've heard a certain "person" from a morning channel 5 show moan about the members ha ha.

I've discovered that I have a really boring username though. Hmm, must think of something awesome and witty.

hello AbbiS, welcome to the board come and join us for a chat later on the friday night thread if you want to.

Hello from me too, but no I don't have a child with DMD

Hi AbbiS, I don't have a child with DMD either, but the Friday Night Thread is a really good way to meet other MNs. I've been using this board now since March, and have found it to be friendly, brilliantly informative and supportive!! See you later on it I hope

I'd put Duchenne Muscular Dystrophy in a thread title to find those with experience. Oh yes, hi and welcome!

Hello and welcome. Different dx here too - but often find advice given on other threads are relevant. There are lots of crossovers

Ha, ha I think I know which particular TV er ... personality that would have been.

As others have said - look out for the regular "Friday night too tired for ....." thread. It's a great way to introduce yourself and get to know some of the other MNSN posters. It's really just a general thread where we can either have a little moan after a bad week or celebrate a good one along with much sharing of virtual gin and chocolate (we still need to demand a chocolate emoticon).

Hi abbis, just wanted to say welcome to the board. We dont have DMD either sorry but it is always nice to see new people on here.

Who has been moaning about MN tbh i tend to stay around this board, it can get a little scary on some of the others. Lol

I did consider putting DMD in the title but for some reason didn't, will do though.

Can I name names on here? Better not, but he looks like a morning chat show host from ITV but has much bigger ears. I have no respect for him since he said that we shouldn't look for cures for rare diseases because its "natural selection". As DMD is a rare life limiting disease it really got my goat! Would be different if one of his children was poorly.

Thank you all for your replies, I will try to pop on later once I have got the children to bed. No vino or chocolate for me though, I joined WW on Tuesday

Oh dear, am I being thick? Is it possible to edit posts? So I can change the title. Thanks!

no edit function unfortunately or spell check as you will notice from my posts

You can report your post to MN (button in blue strip above each post) and ask them to change the title. They are pretty good about things like that. Or you could just start a new one.

You can name names. Just nothing libellous. Have a look around on some of the more, hmm, 'robust' boards for inspiration! We can swear and everything. We tend to be supportive and mostly lovely here in SN children, but can tell it like it is, also. AIBU is a bit of a bunfight, though...

Hi abbis
Welcome its friendly here with a mix of dx. My ds doesnt have DMD but my cousin had DMD.
How old is your ds?

Hi and welcome abbis :) You are going to have to grass up the name as I dont watch much TV lol and the only one with big ears I can think of is either mickey mouse or spock

Different dx with mine too however I did used to help run volounteer fishing trips for some fantastic kids with DMD a lot of years ago and hold some great memories of fun times :)

Hope you enjoy yourself here and are better at being quicker than me keeping up with the Friday Night Thread that gets passed around pretty quickly in there

Thanks for all your replies. The "personality" I was referring to was Matthew Wright. He really seems to have a huge problem with MN!

My ds will be 7 in just over a month. I'm guessing by saying your cousin "had" DMD that he is no longer with us, Slacklucy? :(

Coff33pot, that sounds cool! I need to find some activities for ds to do in the summer, I did find a place that does free boat trips but we didn't manage it last year. There is a SN holiday club in Portsmouth but I don't drive and dh works so it'll be tricky getting him there everyday. He doesn't have a social worker yet (they aren't interested while he is still ambulant. I know), so I don't think he can get transport and we have to foot the whole bill for the 3 weeks the club runs.

I didn't manage to make the Friday night thread, I had a 16 month old bouncing off the walls until 9pm. Maybe next week.

Oh it was fun. Was a long time ago now but it was a local tv station where I lived then in conjuction with a fishing club I used to belong to. We used to do it 1 day each year where we all partnered a child and took them fishing for the day then we all went back to the TV studio so they met the celebrities and had a party. My BF father at the time made fishing rods by hand and so he adapted some for wheechair use so tall he children had the independence and experience of doing it themselves. We all had some fun :)

That holiday club sounds good but I guess is expensive. Its totally wrong that the social workers wont help I am disgusted at reading that. Your child should be allowed to take part in as many life experiences as is possible.

I know a lot of people on here have contacted the Family Fund? Maybe they could help with vouchers for this? Someone else here may know :)

Hi Abbi
Another one here just coming to say hello :)

Hi Abbi, sadly my cousin is no longer with us but is very much still part of our family & always will be. He was the loudest, liveliest, fun loving perosn ever. For him his DMD effected his heart early on so was only 14 when he passed away but a good many of his friends are still here and still in touch.
DMD didnt stop him travelling, loving school, friends & most of all partying.

That does sound really awesome coff33pot! Must have been really fun :) I did look into family fund a while ago but it seemed we couldn't apply as dh earned too much but I recently looked again and it seems they no longer have that restriction. We've recently applied to Make A Wish, they are granting ds a wish but the thing he has asked for is proving tricky to grant so I think maybe they'll move down the list to try a more manageable one soon - which is absolutely fine as he isn't too aware of it anyway. Whatever wish they grant will be fantastic and will make life long memories.

Very sorry about your cousin. I am in contact with a fair few DMD families and men with DMD via social networking and it is heartbreaking when another life is taken - even more so when they are so young. I try not to think about the future.
Happy to hear he had a good life though. Ds doesn't have many friends due to his behavioural and learning difficulties so one of my main worries is that he will have no friends as he gets older. His behaviour has improved recently though and the children in his class are starting to approach him again to play, which is a huge relief. Next hurdle is Junior school.

Thanks again to everyone who replied, means a lot.

Abbi, my cousin also had learning difficulties but as he got older & went to secondary school friendships seemed a little easier, he was particularly popular with the girls
I know my aunt really wondered when he was at juniors if keeping him at mainstream was the right thing as i think it was a difficult time for them all.
He did go to ms secondary & he thrived there.
I think whatever the child/disability finding the right school & support is key.
Are you in touch with the Duchene family support group (DFSG)? We've been to several of their functions over the years, they are always great fun & in many cases families continue to support each other when the boys are no longer here. I can understand not thinking about the future too much, better to focus on the now. x