[traciewarr]

My name is Tracie and I am mum to Mya who is six years old.  Mya has dravet syndrome and severe global developmental delay.  Mya does not go to school as they cannot provide her with one to one care, so we teach her at home.

Mya is a lovely child, alwyas laughing, but unfortunately always having seizures.

Mya is supervised 24 hours a day and is still in pullups to which we have to pay the bulk of the cost for.

We are currently fundraising to have a soft play/sensory room built for Mya to give her a safe environment to play in.

More can be seen on Mya's website: www.myacampbellappeal.webeden.co.uk

If you can give me any advice on how to go about fundraising or anything else, please feel free to contact me.

Kindest regards

Tracie (Mya's mum)

[Jeannie]

Hi Tracie
Welcome to the forum, and hello to Mya x

My 7 yr old Lilie has CP with spastic quadraparesis, GDD, reflux and is gorgeous, still is in pull ups/nappies too. We get a certain amount from local trust c/o health visitor, but as the pullups are more expensive than nappies we would have to top up, so we 've decided to do half and half!!! Still searching for alternatives that are eco friendly, but they are expensive. Enough rambling about nappies, as you didn't ask, but I do go on!

We did a fund raising weekend for Lilie to support the place she attended for conductive ed. before she started school. We involved a 'car'club we joined on line, who had meetings every so on, we had a camp at Chatsworth, had a fantastic time met wonderful folk ( the Geordies were brill, very warm and bottomless pockets!). Are you involved with anything like that? What about a bar b q? Get in touch with a local celeb? 
-just visited yr website.she's a stunner! Lucky mum and dad.
If you've already met Girls Aloud why not get back in touch-ask for stuff to auction and get someone to ebay them. Just one or two ideas but it's hard work isn't it? How does the local press work in your area? Could they 'sponsor' Mya, or take her onboard as a celebrity in order to raise funds?

You have to bully folk these days to get anywhere with disabled kiddies so bully off!
All the very best to your family
Jeannie x

[Julie]

Hi Tracie

Welcome to the site.  What a lovely family you have - there are some great photos on the website.  Mya looks a beautiful girl.

I have a bit of experience with fundraising, which you might find useful.  I have been part of a very successful PTA group, and have found out lots of useful things in the last 8 years!

First of all, Jeannie is absolutely right about involving the local press.  You need to raise public awareness of your project - the sensory room.  You could ask if there are any companies who would be willing to hold sponsored events that could help. 

One very important thing to remember is to find out if you have any friends or family who work for banks/building societies who will do matched funding.  This means that any of their employees who help out at fundraising events can help to match £4£ (usually upto a maximum of £750 or below).  So if you held an Auction or raffle that made £500 and you got a Barclays employee to help you to run it, then Barclays would give you £500 as matched funding.  Our PTA has done this with Barclays lots of times, but I have recently found out that lots of other banks and building societies do this too.

What about a charity evening such as a disco or skittles evening.  In our area there are places who will give you their venue for free if you hold a charity event there. 

My son has Asperger's Syndrome, but he manages to attend Mainstream School.  One thing which I helped with at the school, was to kit out a sensory room.  It all started when I managed to obtain some funds for a sensory lamp.  The Senco then brought in a wall of twinkly lights that her husband had made,  the PTA gave funds towards some beanbags, another sensory lamp and some other touchy/feely things and the result was amazing.  All the children like going in there (and most of the teachers too).

Good Luck with it all.  I am sure that you will get to your goal for your lovely daughter.

Best Wishes
Julie x   

[Nikki]

Hi Tracie,

I've just looked at your website and your family look lovely - Mya looks gorgeous. 

Welcome to the forum from our family.  We have three kids.  My daughter N (4 1/2) also has global developmental delay and doesn't speak.  She takes occasional seizures too, but nowhere near the same amount as Mya.

We tried a spot of fundraising for a trike for N and found it difficult ourselves, maybe because we have liitle experience in this area.  We found that there were several local charities that are already set up for this type of think and already have big business funding, like:

www.braveheart-trust.com     (This is a Scottish charity)

www.make-a-wish.org.uk       (UK wide)

I'm sure there are lots more if you look.  Local businesses like the publicity that being charitable brings.

Regards the pullups - do you not qualify for free Pampers/Tena from your local continence service - I know we do.  You shouldn't have to pay for these at all.

Your sensory room sounds great!!  I wondered if you knew that you can borrow special needs sensory equipment and story sacks etc from different lending libraries?  If you google you'll find them like:

www.gtlla.org.uk/service

http://www.familiesonline.co.uk/article/articleview/1967/1/154

http://www.cerebra.org.uk/parent_support/information_and_advice/cp_information/treatment/non-recognised_approaches/play_therapy.htm   cerebra has a postal lending library

If Mya is home schooled, does a play specialist come and visit you?  We had one come to see us before N started her special needs nursery.

You mentioned Mya does not talk.  Have you tried Makaton signing?  We've been using it for about 6 months now and we are starting to get somewhere (very, very slowly!!)

Last of all - you sound like a very busy lady!!  Why can't you push for local authority funding for an extra auxillary, so that Mya can attend school at least part of the week?  It's something that is entirely up to you, and you may wish to home school, but do you not need a break?

Lots of luck with your fund raising.  Let us know how you get on.  I look forward to talking with you on the forum.

LOL  Nikki

[mom2one]

hi tracie,
Welcome to special families. I also am new to the group. Hope you are having a good day. Lori

[Speeds]

Hello and sorry for the delayed welcome.

I hope that you find the site useful

xxxx

[paula]

Hi!

Sorry for the even later welcome! Thanks for joining our forum  - as you can see there are loads of lovely people here with some great advice. Hope you are able to get your soft play/sensory room. Please let us know how you are getting on.

Paula x