Fund raising help

welshdragon

welshdragon

welshdragon

Soldato
Joined
28 Dec 2009
Posts
6,910
Location
Wales
Hi Everyone,

As some of you may have seen previously I am currently raising funds for my son Jacob to have an operation in the US called SDR. Jacob has Spastic Diplegia Cerebal Palsy which is a neurological issue which affects Jacob’s mobility. He is unable to stand or walk independently. Although Jacob’s diagnosis is that he has mild SDCP and thankfully the damage that has occurred will not get any worse his mobility is unlikely to get any better without intensive physiotherapy and significant medical support. By Jacob undergoing an operation called Selective Dorsal Rhizotomy (SDR) we can substantially reduce that risk. Jacob has been accepted for the operation at St Louis's Children's Hospital in America. The younger Jacob is having the operation the less likely it will be that he will endure painful muscle contractures which would require painful surgery to correct.

We have so far raised just north of £25k of our £70k target which is phenomenal.

The reason for posting is that I am falling upon the forum for help. I have included the links to our Facebook and GoFundMe pages. We are extremely grateful for any donations but I'm hoping forum users may be able to assist in other ways?

If anyone knows of any funding sources we might be able to apply to or persons/organisation we might approach please let me know. Likewise we have a gala event in April if anyone knows any companies who might be willing to donate raffle/auction prizes.

Here are the links:

THIS is his gofundme page

I also have a facebook page

More about SDR

If people would be so kind as to like and share our FB and GFM pages far and wide we'd be very grateful.

SDR is not routinely available in the UK. Not only does the NHS not fund the operation it won't pay for the intensive physical therapy Jacob will also need. Additionally in the UK they will not do the procedure until Jacob is 4, despite the person who trained them recommending the earlier the better thus the older he is the higher the risk of further complications.

If anyone has any questions please fire away.

Thank You so much for your time and any help, God Bless. Andrew, Hannah and Jacob x

(Edit: Thread approved by Damo)
 
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Pleased to see you're getting a decent portion of the way to the total. Can't offer any advice on fundraising, but really hope you get there :)
 
Lad I know had this op, Oskar Pycroft, you may have seen him in the press. Bristol City fans raised a large chunk of the money given he is a massive fan himself.

Anyway the point I was going to make is that he was able to have his op and then the physiology privately in Bristol, meaning it cost just over 50k instead. Are you able to look into having it here instead. If you're paying they should do it in this country.

Shout if I can be of any help, and put you in touch with Oskars mum for example. :)
 
Possibly, I've been in touch with a few families who have had it in the UK. The UK isn't ready yet for this operation and our biggest barrier is the age limit the UK have imposed.

My son would have to be four, or going on four, to have the operation despite the pioneer Dr TS PARK, the one who will be doing my son's surgery saying it should be done from 2 onwards. Coincidentally it's Dr Parks team who trained the few surgeons doing it here.

My son is two and a half so it would mean waiting an additional year during which time his situation with muscle spasms and deforming contractures will only get worst or cause him to develop in such a way he would need further surgeries potentially. Not to mention other potential issues.

We've looked at both scenario's extensively and getting him the op as soon as humanly possibly will give him the best results. Further, every neurologist I have spoken to has basically told me to go to St Louis, where the do the op pretty much daily and thus have the expertise and systems in place to guarantee the latest version of the procedure and the best chance of being complication free.

There is another family, who's mother is a doctor and sits on an SDR board in the UK and she has only recently taken her son to the US to have the operation in St Louis which again I think speaks volumes of the current state of play.
 
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Well, after an extremely busy few weeks and lots of fund raising and support we have now passed the half way mark and are currently sitting at £36,983. Totally blown away by all the support and generosity of people, many of whom I've never met or am only meeting for the first time. Completely overwhelmed as at the start it seemed an impossible target!
 
Just by way of an update we've had some great news. It now looks likely the op will be brought forward to May!!!

Fundraising wise we are now up to £44k, so I am quietly confident we can hit the new schedule.

Thank you to everyone for your continued support!
 
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