Duchenne muscular dystrophy

[asouthwoldmummy]

My 2 year old DS has this condition, and I just wondered if anyone else has a DS affected by duchenne.

No But do know there is a very good forum that my friend and her husband uses he has a form of muscular dystrophy would you like me to find out for you ,

That would be great thanks, I wasn't actually expecting to get any responses!

ok will call them later, know the forum is not all doom and gloom either

have sent her a message and will let you know .

Know very little about duchenes bar the well known stuff ,But know there are people and parents on there with it

I'm sure you find lots of support on here too asouthwoldmummy especially sharing life's struggles, coming to terms with diagnosis, frustrations about professionals, benefits,etc.

There are lots of lighter moments too.

Riven - thanks, I think we met on another thread but can't remember where.

Al1son- he was actually diagnosed 18 months ago so we have come to terms with it and out the other side. I still have bad days but he's my wonderful happy little boy, and I wouldn't change him for anything.

He sounds lovely.

I'm pleased you have sorted the dx in your brain - I'm still in the process for DD1's AS and possibility for DD2 but we are still in the first few months.

I'm sorry to hear that, just remember the dx doesn't change anything, they're still the same DC's they were before you found out. I figured his life will be hard enough when he's older without me being miserable. I decided within a couple of days I wanted to make his life as normal as possible for as long as possible.

You're right. I'm just taking a little while to adjust myself to a different view of the future. AS isn't such a bad dx and I wouldn't change my girls for a moment

Just remember that!

asouthwoldmummuy frends on holiday but will get it for you soon as can

I made the same choice when came to dd , ds3 has sn but dd though is nt her medical problems will and are causing more problems and the long term implications are very serious

So decided that will cram as much living and laughing while we can

Thanks a lot. I know sometimes it's hard to think about but I'd rather have 20 years with him than 20 years without! Live for today and think about tomorrow when it comes.
What does your dd have?(if you don't mind me asking, don't feel you have to answer). We live in such a small down we don't know anyone else who's DC's have any medical conditions.

Hi a southwoldmummy, I'm actually just down the road from you in Suffolk! My ds doesn't have DMD (he has other sn) but our family has been affected by the condition.
Have you been in touch with the Duchenne family support group they are very active in Essex and Suffolk?

I haven't but I'll look into it thanks. DH is raising money for the MDC though.

I know they run events, parties, etc the impression i get from them is that, it is very much about living with the condition & enjoying life. I have met some of the people involved and the support from each other ahs been immense. I know of one family not too far from you.
They ahve a website with contact details but if you ahve trouble finding them just let me know.

Anon - I've had a look but their online membership is down at the moment so I'll come back to it. Where in suffolk are you from?

We are near Aldeurgh.

Hi! I am the mother of a 12 year old with a condition allied to Duchenne but slightly different, and I know lots and lots of people with Md and similar conditions. I do urge you to get in touch with the MDC, they are great and offer so much support, moral, financial, you name it. My dd lives a really full life, mainstream school, out of school activities, dance, girl guides, etc, despite being full time in an electric wheelchair and pretty profoundly physically disabled. You will meet lots of really symapthetic and fun families, do get in touch with the MDC. We are miles away from you but there are hundreds of people all over the UK in our situation. Anything you want to ask me here, just go ahead.

Thanks cloelia, people on the SN threads are so nice! Did her school have to make many adaptations to accomodate her? Do any local appointments happen at school or do you still have to attend clinics? Thinking about HE so anything regarding schooling and her condition is of interest!

As far as school goes,(if you decide not to HE) we have found our LEA to be great, all the primary's we looked at were really keen to have our ds2, he is at mainstream primary but has 1 to 1 support (he has v mild cerebral palsy, autism and learning difficulties). We also found pre school services, phsyio, OT etc were all fantastic. We also accessed Hydro sessions at the SN school pool via the SN outreach.
Judging by some of the experiences other parent have reported on mumsnet I think we live in a pretty good area for support & services. Suffolk was (when ds2 got his last w/chair) the only area to have no waiting list whatsoever for wheelchair services.
All schools, pre schools etc should all be willing to make adaptations.
DS2 now has his OT, PHYSIO & SALT appnts at school although OT also visits at home just to assess any needs. Although we do still go to the hospital (ipswich) for orthotics although we sometimes go to SN school for joint orthotics & physio appnts. Saves a bit of time!