Hello, wonder if anyone could give some advice. DS, 4, has EB Simplex - it is a skin blistering condition, but a mild form and mainly affects the feet. I'd never wanted to go down the road of DLA but the older he gets the more I'm feeling it is limiting his mobility. I guess I haven't thought about it because I use the car so much for him and never realised how much I was compensating to make sure he doesn't have to walk far.
The thing is he can walk quite far one day, but this will cause blisters which then mean even short distances are painful until the blisters heal again. I've recently found myself giving him kiddybacks quite a lot, needing to give him "lazy" days in the house so that his feet have a chance to heal etc. A lot of his extended family have the same condition but are a lot older than him so the ones that started claiming DLA did so a long time ago (plus I'm not very close to them so don't feel I'm in a position to quiz them about it). The thing is he appears normal in that he can run around and play football etc. but then the consequences are so painful for him. I don't know if he would fit the criteria for DLA, I'm 100% sure that if I didn't have the car I would still need to have some kind of buggy for him as repeatedly walking any distance is just a no-no.
Sorry this is a bit of a ramble, anyone had similar experience/have any ideas whether it's worth going down this road?
yes it is an awful form BUT if you go to www.cerebra.org.uk they have an excellent guide that takes you through the form question by question, on how to answer.. For the first time i got lower mobility as well, in total i spent about 5hrs completing the form. Make sure you have copys of any letters, specialists reports to send with it.. good luck.. and make sure you look at that guide!
it is worth applying for, if you phone the CAB when you have the form they will make an appointment and they will help you fill it in, even if you can not get the mobility part of dLA you should get the care component as obviously your little one needs more care than the "average" child of his age needs, we get the care part for our daughter as she only has 1 hand and obviously needs a little more help with things. good luck and remember make an appointment dont just turn up x
Hi there, you could also ask Debra for help. They have a social care team who helped us fill out the form. The lady came to our house and we filled it out together. Don't think I could have done it without them! Good luck..... www.debra.org.uk