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Any ideas for fundraising for my granddaughter's operation

(63 Posts)
TheMaggiejane1 Sun 10-Jul-16 14:28:59

My lovely granddaughter is 6 years old and has cerebral palsy. She cannot walk at all unaided and we have been told that her only chance of walking is an operation called Selective Dorsal Rhizotomy. Great Ormand Street Hospital will do this operation in March but unfortunately it is not done on the NHS. It's not considered a priority apparently! We have started up a Just Giving page and people are incredibly kind and generous but we need to come up with some more fund raising ideas as we have to raise £50,000! Has any one else got any experience of fundraising on such a large scale?

Maggiemaybe Sun 10-Jul-16 16:23:17

I wish I could help, from one Maggie to another smile, but I've no experience of fundraising on this scale. No doubt others who can be of more use will be on shortly. If you do come up with anything I can help with in any way at all, just give me a shout. I'm sure other Gransnetters would be up for helping out too if they can. Your granddaughter is just gorgeous and I hope and pray she has her chance and it pays off for her. flowers

Mumsy Sun 10-Jul-16 16:30:21

what about a local sponsored walk, your local newspaper may be able to help with the advertising. A garage sale.

this site may give you some ideas

I wish you every success.

cornergran Sun 10-Jul-16 16:52:34

Waitrose agreed to have one of the donation bins that customers put their tokens in for the son of a friend, his need was to go to America for surgery. I'm not sure what else she did to fundraise, I'll ask her when I can. Waitrose were very helpful, they don't insist on registered charity status or have any particular focus. I believe Asda do something similar, but not sure. Good luck maggiejane, its so hard when our grandchildren need something we can't provide.

TheMaggiejane1 Sun 10-Jul-16 17:37:38

Thank you for your ideas ladies, I hadn't though of the Waitrose bins cornergran , I will chase that one up! Thank you very much for your support maggie, you are right she is gorgeous, she is an inspiration to us all, always so cheerful and happy. I will have a look at the fundraising website, they must be something on it I can do! I am going to give some fundraising dinner parties using GD's favourite foods ( Mackerel Pate, sausages and apple crumble, hopefully I'll be able to add a few twists to make it a bit more sophisticated!) the idea is that if I have one, my guests then go away and have one and then their guests have one as well etc!

Nelliemoser Sun 10-Jul-16 18:10:55

Themaggiejane1 have a good look at these organisations/

There are a lot of links on this page to work through. I hope they help.

shysal Sun 10-Jul-16 18:21:28

If you have a good local community spirit, how about copying The Archers and having a Jumble Trail? I thought it sounded like a good idea as each household is responsible for their own stall, and help with organizing is given via the website.

TheMaggiejane1 Sun 10-Jul-16 19:04:43

I've forwarded the funding link to my daughter to have a look at Nellie, one of the charities mentioned the operation we are trying to fund so that might be hopeful. I think they are having a jumble trail in our area soon shysal so I will look into that - goodness knows what I'd sell though! Might have to rent out my OH - for odd jobs, not other things obviously!

harrigran Sun 10-Jul-16 20:29:50

My understanding was that 120 children a year get the operation on NHS in five centres in the UK. It is a big ask to raise £50,000.

granjura Sun 10-Jul-16 20:43:24

TheMaggieane- I am so sorry ot hear this.

And wouldn't Gransnet be a perfectly wonderful place to start. I'd be happy to chip in.

Could GN admin facilitate this, once TheMaggie has sent a medical confirmation of the case. Sorry TheMaggie- but sadly as a new poster it is important thatn admin check this first.

granjura Sun 10-Jul-16 20:56:39

Another idea is to get in touch with the biggest private health care group, who has taken over Bupa, called Spire - and see if they could perform the op at one of their hospitaly at a special price:

Jalima Sun 10-Jul-16 21:04:13

The Welsh NHS is funding this for a child in Wales.
Here is the link for you, I know about this because it is near where some my family live:

I do hope that NICE will approve this operation for children in England too.

Good luck

Katek Sun 10-Jul-16 22:22:53

Has your dgd had the botulinum treatment? Young friend of ours had this with very positive results.

TheMaggiejane1 Sun 10-Jul-16 22:51:05

Yes Katek she has Botox every year. It involves 6 very painful deep muscle injections. She then has to be in plaster splints for 2 weeks. She is supposed to have intensive physiotherapy after that, but that never seems to happen. She has had various results with Botox. One year she walked about 5 steps completely unaided but it wore off after a few weeks. It is a very short treatment and can only be done once a year. It does help to ensure that the muscles don't get tighter over the years though, whereas the SDR operation offers permanent results. Harrigran we have been told that there is no NHS funding in England at all for the op. Up until last year there was funding available but it has all been withdrawn. I suppose it might be different in Wales, I think they get free prescriptions there as well.

Grannyknot Sun 10-Jul-16 23:00:56

Hi Maggie so sorry to read your story and that no funding is available.

If there is a cinema in the town where you or her parents live, a suggestion is to approach the management and ask that the venue + a film be donated, choose a family favourite film and sell tickets to friends and family, advertise it all over town, get a write up in the local paper. Funds are raised from ticket sales and when I've been involved in similar in the past, the cinema management have only asked for a small fee to cover staff coming in for an extra shift.

Local businesses can often be very good allies when it comes to fundraising.

Grannyknot Sun 10-Jul-16 23:06:49

Sorry meant to add, you may have to take a "little and often" approach. For example a local mum where I live has a very poorly child and she will constantly promote fundraising efforts, e.g. raffles for spa days, golf lessons etc. etc., having approached local businesses.

Anya Mon 11-Jul-16 07:35:30

Oh Maggie so sorry to read your OP (((hugs)))

There have been two families locally who gave had to fund this operation themselves. It is not right. Our NHS is failing these children.

Some good ideas above. You do need to get your case out there, in you local papers, radio, etc.. Perhaps something like Walk a Mile for Bella might catch on. Is there someone in the family with good organisational skills, and the time to work on this?

The Waitrose idea is a great one too. And perhaps GNHQ could come up with a suggestion or a sponsor or something. It means so much ... doesn't it?

TheMaggiejane1 Mon 11-Jul-16 09:58:57

Lovely idea about the cinema grannyknot we will approach the local cinema. granjura my daughter is trying to send a report over to me, but to be honest most of them are completely ununderstandable (I'm not sure that's a word). If you follow the link to the Just Giving page you'll see that there are lots of comments from people who know us, parents with children in her class ( she goes to a lovely mainstream school) as well as teachers, relatives and friends. I think you can tell from the page that we are well known and genuine! There is also a link to the FB page we've started up which has photos of Bella and her parents.

TheMaggiejane1 Mon 11-Jul-16 10:42:15

maggiemaybe has also pointed out to me that once you see my GD's name on the Justgiving page you can google her name and there are lots and lots of articles on the Internet about her being a flower girl at her Auntie's wedding which was reported first in the Daily Mail and then was picked up by press all over the world. It was a very exciting few days!

Bagatelle Mon 11-Jul-16 13:20:11

Local Rotary club? The Crowdfunding page says they're in St Neots's and St Neot's Rotary looks active; they might be able to give you some pointers.

granjura Mon 11-Jul-16 14:26:35

TheMaggieJane- I of course believe you- but just mentioned if fundraising is done via GN, then they should check it (hugely sadly there have been scams on Forums before sad ) -

Could GN admin please set up an official link/thread for those of us who would like to contribute to the fund please.

granjura Mon 11-Jul-16 14:27:47

Sorry I seem to have missed the crowdfunding link in the OP- or was it added later?

TheMaggiejane1 Mon 11-Jul-16 15:59:06

Yes I think they're approaching the rotary club thanks you Bagatelle. The link has always been there granjura. It's very sad that we have all had be become so suspicious nowadays isn't it, but I completely understand what you're saying. There are some very horrible people around!

Nelliemoser Mon 11-Jul-16 16:30:04

granjura I would think that asking GNHQ to set up an official link to a charity might be difficult for them to do for legal reasons. They are essentially a business.
It would probably be ok for a GNer to promote a registered fund.

harrigran Mon 11-Jul-16 16:41:24

I do not think this is the place to ask for charitable donations, it could open the floodgates to scammers. As a family are you not able to raise the money from savings? If my GC needed an operation I would use my savings to fund it.