Monday, 22 August 2011

Selective Dorsal Rhizotomy

I posted yesterday about the SDR operation that we are contemplating for William.

Its such a huge choice, but...
Will's dad and I have sent the online application. We talked about it for ages, a few hours and then we decided that we could sit and wait and HOPE they change the rules about the American version of the SDR being done in this country on a wider scale, or we could get our arses in gear and get ourselves to the states.

So as long as Will is accepted, we're hoping to raise the money to go mid Feb/March. We have worked out finances, and we think we need to raise £45,000/50,000. We want to have money to come home with, to make sure we can have a private physio to hammer the intense physiotherapy for Will. We already know that the NHS is crap from that POV, there just isnt the funding to get enough physio! Also, no doubt we will need more equipment that the NHS wont/cant fund or will take years to do it. In addition, another family that we have been speaking to had an extra unplanned operation, which left them with more medical bills to find the money for after they came home. We need to be prepared for that financially.

This is quite possibly the biggest decision I have ever made. I am sat here like a lemon, I feel like I should be doing something, not sure what though! :/ Its playing on my mind loads now, I am really fidget-y.
After sending the application, we got an email that said to expect a reply within the next 48 hours, with a list of information they need, MRI scan results, X-Rays, medical notes, and the like.
Once thats all been sorted, we can start fundraising. It is going to be a long, hard slog to get every penny we need together.
Watch this space and wish us luck!

1 comment:

  1. Michaela - may well be useful for you to set up a charity specifically for the fund-raising. I would think that people who don't know you are more likely to make donations to a charity rather than an individual, as there are so many fraudsters out there. There are also online things such as Just, who set up donation pages for you that people can use to go online and make donations. We have recently done this because we are doing a charity walk to raise funds for Christies Hospital - you can see our page at:
    which will give you an idea of how easy it is.

    I would also suggest getting local radio to help you out and to have links to your fund-raising stuff on their websites.

    I am sure that your fellow bloggers will not be adverse to putting a link on their websites..There are probably hundreds of ways for you to get the message out there and to get the donations in.

    I think that it has taken a lot of courage for you to have made this decision and I really do wish the very best for all of you.

    Lou :-)