A bit overwhelmed really.

[Galena]

So we went to Bristol to talk about the SDR operation for DD. He felt it was something that she would be suitable for and that it would benefit her. However, our NHS trust has not yet funded the op for anyone. So we need to raise £40,000. That is overwhelming enough to be honest.

However, since starting the fundraising last week, I have been completely blown away by the kindness of so many people. We've had donations from people we don't know - friends of friends, etc. A friend made our webpage, we have friends making and selling things for the fund, we have a complete stranger (ex-colleague of a friend) running a marathon for her. We've been on local radio and will be on the front page of the local paper tomorrow (unless the town blows up or some similar emergency...) and the editor of the paper has been so moved by the story he wants to run a campaign for her with a series of articles on her. It doesn't even end there! We bought some collection tins on eBay and the seller read the website and refunded us so all we paid was the postage. We're also planning a casino night as our first event, and the casino hire company will provide the equipment free - we just pay the croupiers' wages and delivery.

I've probably forgotten some other things.

I am absolutely overwhelmed... There are so many good people in the world.

I just thought I'd share because sometimes we need a positive story!

:)

Wow Good luck. It's so rotten that the NHS won't fund this given the ongoing costs of the care that SDR may avoid. As always though the people who care about it are the people who don't have the time to campaign with the NHS/NICE etc.

We are about a year behind you on this process, although DS is still not walking at 2, 3 although he has taken 3 steps so far he's still just not getting it. We went up to Bobath who said try and get the referral but probably you still won't need it. Anyway that's us and your DD has been recommneded to time to help out methinks.

Thanks, Everyone. It's really crazy because it will probably cost more in the long run if we didn't have it done.

Chatee, hope DD's surgery goes well.

Thanks Galena x
A message to all, my dd didn't take her first steps until over 3 years and then used a Kaye walker ( and wears afos) until 9 years and then has walked with just afos for 2 years but now looking back I feel that this has been slightly detrimental to her as her feet have totally collapsed hence the need for surgery, so maybe I would recommend a 50/50 approach.....
But one thing that has helped my dd is her love of sport- swimming being her number one, and also does rda and boccia and recently started javelin...
Please all really keep trying with the physio terrorists suggestions- I have seen children who totally refuse and it does show in their teenage years xx

Lovely article Galena, good luck.

Chatee - we are back in at the moment for more physio, having to be really ruthless at the moment!

chatee, my ds2 wore AFO'S & then DAFO'S and then the physio wanted to try him without to get his muscles working... all thats happened is that he has lost some of the range of movement, his ankles have tightened at the back and feet collapsed in.
We are now in the postition of trying to get a 10yr old with autism to wear splints again, bloody nightmare.
Both paed & us said we were reluctant to remove the afo support but the physio was adamant.