Hi Janep

I cannot believe you have been turned down. I don't hold much hope for me then with my renewal. My son has Multiple Epiphyseal Dysplasia, Pierre Robin, clubfeet which have relapsed and he is having 4 hour surgery in September on his twisted knee and relapsed foot.

MED is a form of restricted growth like Noonan syndrome. I can't believe what that person said to you, how dare they!!!! That's my problem too. I think they will contact the school and the school will let me down.

Worry, worry, worry for all of us parents who need this benefit to cope financially. Don't these people get that we would rather have healthy children than have to go the extremes we do to claim something that we are entitled to anyway. God forbid they have a disabled child!!! they probably wouldn't cope.

Good luck.

Ginny

If you think that you have a "Strong" case and that your doctors will support you 100% i would suggest appealing and going to the next step.
Seek representation from a local support group for support on the day as its not a nice or easy process by any means.
Where abouts are you in the country and ill dig out some useful contacts for you