Adam fund for a specially adapted bedroom

adammum

This is a good cause appeal for a disabled child!

My son Adam was diagnosed with Lennox Gastaut Syndrome, a rare and severe form of childhood epilepsy. He has many seizures a day and require 1:1 care. He is non-verbal and has no sense of danger so somtimes very difficult to interpret his needs when upset. Adam is 6 years old.

We found a bedroom specially made here in the UK that will give him a better quality of life. A bedroom that will keep him safe should he have a seizure. Its called a 'safespace', basically a room within a room. We have approached many charities and maybe one might part fund. (we are on a waiting list until September) In the mean time, a sponsored walk has been planned to raise funds!

London to Brighton Walk for Adam Safespace
date: 27/28/08/2011

Please support us if you can, by walking with us, make a small donation or even see us off or meet us in Brighton on 28/8
Meet Adam here :hello:( I cannot add a link but if you google adam safespace or adam london to brighton walk - you will find his website)
Thank you.

ramsas

http://http://wordpress.monkeymail.net/


link for your site..all the best.

Js_Other_Half

In this area a children's OT arranges for them to be installed, with no cost to the family.

Good luck with the fundraising.

adammum

In this area a children's OT arranges for them to be installed, with no cost to the family.

Good luck with the fundraising.

Our sons OT did not approve this 'safespace' as its been over a year since we approached her about it. She thinks he will be 'confined' into a small space. Instead, the OT encouraged us to apply to charities which we have done and one of the charities have agreed to part fund only if we fundraise as well. My son is on a waiting list until September so not even sure they will part fund even.

Annisele

I think that, in your shoes, I'd be asking the OT to put her comments in writing.

I don't know anything about safespaces or epilepsy, but my thoughts would be that:

• Either the thing isn't suitable for your son (because it's too confining, or for some other reason) - in which case it's not going to suddenly become suitable just because somebody else pays for it, and the OT was utterly wrong to encourage you to fundraise for something that isn't going to help your son;
• Or, it is suitable for him - and so the OT/social services should be helping you find ways to fund it and not leaving you on your own.

I strongly suspect the second possibility, but then I'm cynical!

kingfisherblue

Adammum, have you approached cerebra? They might be able to help with some funding. Also, the Family Fund if you qualify in terms of income etc. Try Caudwell Children, Children Today and Lifeline4kids.

Try googling 'grants for disabled children' - many that come up will be for organisations, but there are a lot out there for individuals. Maybe a friend or family member would plough through them for you, as it is very time consuming.

You could contact your local paper and see if they are interested in running your story - more publicity for your walk, and many people will donate for a local child. Updates every few weeks or months are usually welcomed.

Contact women's magazines to tell your story - some pay up to £1000 and some readders might donate as well.

Does your local radio station have a fund for disabled children? Many do, but some are for organisations only.

What about the Rotary Club or Freemasons? If you have a branch near you, they may want to help, especially if you are willing to give a talk at one of their meetings.

If you are a member of a church, they may let you have a stall at a fair, or let you do other fundraising for your son.

Car boot sales can raise around £100+ - maybe it is a good chance for family and friends to have a clear out and raise some money at the same time.

Supermarkets might let you bagpack - get family, friends and volunteers to do a couple of hours each.

Your local library should have information on funding - there are books available that list trusts who will help to fund certain items. Some trusts are specific to one area, others are specific to an industry (so if you or your OH work in a specific industry, your son may qualify). Others are more general. You need to check the criteria before you apply, so that your time and postage isn't wasted.

What about the Variety Club? They will often fund more expensive items for individuals.

Ask local businesses if they will donate something for a raffle - great if you can tie this in with a newspaper story, as most places like a bit of positive publicity. It also means that you might get more people willing to buy raffle tickets. You might have to check out gambling laws, though - I believe that if the raffle doesn't take place on the day you selkl the tickets, rules are stricter and you may need a licence.

Good luck x

kingfisherblue

Link to a safespace, for those who are not familiar with them:

http://www.safespaces.co.uk/safespace/

adammum

Annisele: we had a meeting early this year with two OTs - the main one from the council/hospital and my sons school had their own OT on board as well as a physio and there was someone else. The school OT/physio thought that the safespace is exactly what Adam needs especially when sleeping. The hospital OT on the other hand starts off with the confine space. Then the issue of funding came up and we have had nothing more than 'budget' talk since
its the end of year budget so we cant fund it now
the beginning of the financial year, must talk to manager about funding etc etc etc
she did in the end come round to the safespace idea as she recommends a charity and even sign the form.
our son social worker also agree with the safespace 100%
kingfisherblue: you have some really good ideas and some are already done or in the process and thanks for your other ideas, I will give those a try. Our church is helping out and we have almost 20 people walking, some of these are from the church including our Reverend. We are planning a garden sale, we had a little mention in our local paper, a radio station already had an appeal out. A newspaper had an telephone interview with us and we are about to send pictures to complete that. Yes, we have approached some of the organisation mentioned and to some extent they are means tested and because we both work, we are constantly been told we cant help because of your income. I would agree with them if we were earning £100.000 a year but we are no where near that. I wonder if anyone have seen some of the forms these people send out to someone asking for funding?
David davision: spot on!! thats exactly how we feel when we actually saw one at an exibition over a year ago. It depends on the space you have. The one for my son cost £5,300 but it could be less if room is smaller or more if bigger. This is a very good investment as well. Our son is 6 years old and his safespace will last him into adulthood.

ebay: I will be doing some ebaying next week as I have taken some leave to put some of these great fundraising ideas to life. Thank you all for your input.

Tigsteroonie

I think the Safespace looks brilliant! Such a shame you can't get NHS funding for it. I wish you the very best for your fundraising

*Robin*

Adammum I put a link on the Families board to this thread, as that has more readers.

Kingfisherblue has given you some great ideas, and following Annisele's comment I think I'd be asking for another assessment as a year has gone by since the last one.

However you do it, I hope you manage to get your DS his safespace soon.

lilly81

Have you tried the variety club?
They are pretty good at funding items which other charities don't cover.
Good luck