2011-02-07T16:15:00.000-08:00

On the 27th November 2010, 71 of my amazing friends and family abseiled off of the Sofitel Hotel at Gatwick Airport in a bid to achieve a target of £12,000 to purchase a specialist communication aid for my beautiful son Dylan called a Tobii C12.

It is with great pleasure to announce that through the fundraising efforts of the individuals involved in the abseil, all who donated online and special friends who organised their own fundraising events we achieved in excess of £14,500. Meaning that Dylan WILL have his Tobii for Christmas 

Our fundraising efforts are not ending here.

From the age of 5 Dylan has been living with almost no provisions through the health service. He has been without a suitable wheelchair, toilet, home seating system and comfortable seating in over 2 years, all of which he is entitled too. Sadly Dylan’s needs have proved very complex for the professionals involved and has resulted in Dylan being heavily let down by the services. In March this year I withdrew Dylan from school and home tutored him myself for 6 months, again with no support from the health service or education, directly related to the fact he had no suitable equipment to use within school that was safe or comfortable. He was suffering. In the 6 months of home education, I got my boy back. He was achieving educational goals I was setting for him, gaining weight, smiling and above all enjoying life. He flew through the work like there was no tomorrow, educated on my lap at the kitchen table, curled up in a ball on my lap on the sofa, laying on the floor, where ever he was he was learning and he was learning fast. Dylan is almost 8, as much as I like to think I can do this forever, I can’t and shouldn’t. Dylan is now attending school part time, completely dictated by the very limited time he can spend in an ill fitting, unsafe wheelchair . All I have ever asked for Dylan is that he has every opportunity, every experience and shares every smile that all children in this world are entitled too. I can not be his equipment forever, and he needs to be given the freedom of independence.

As a whole 2010 has been a very difficult year on many levels, and the continual fight to get Dylan what he is entitled to through the health service has tested my strength. By summer this year it was sink or swim. WE DO NOT SINK and we came back fighting. Dylan tried the Tobii C12, a computer that I saw by chance when flicking through a brochure, I made a promise to him that day, that he would only ever try equipment and technology that we could get him. It is all to common to be told about all the wonderful things out there that could transform our children’s life, but ever being able to access it is like being able to pull a star out the sky. NO MORE. If he could never have it, then he would never see it. Only things within our reach would enter our world. The Tobii was a gamble… £12,000. Could we really achieve that… If you believe, you can achieve anything.

To have had such an immense amount of support from so many wonderful friends and family it has en-stilled me with a new hope. Could we fundraise more money and buy Dylan a specialist wheelchair. Dylan has Dystonia also, which means his muscles are continually moving. A rigid fixed wheel chair causes Dylan immense pain. A simple way to explain a spasm or a dystonic movement is to know what cramp feels like. It hurts so bad, you don’t want to move, but it only stops hurting when you do move. Now imagine having cramp and someone or something pinning you down and holding you so that you cannot move… doesn’t bare thinking about really does it! A dynamic chair has flexibility, every part of the chair can move meaning that Dylan’s bones and muscles do not take the brunt of the movement. A chair that can go from sitting to standing will allow Dylan continual positional changes through out the day, reducing the chance of forming deformities to his joints and bones, reducing discomfort and allowing him ‘normal sensations’ of being upright whilst moving. A chair that has a motor on it would enable Dylan to learn to control and drive his own body giving him even more independence… independence isn’t always doing everything for yourself, independence is being in control of your life, whether that is instructing someone what you want or need help with, where you want to go, what you would like to eat or drink, by multiple means of communicating.

Does this chair exist… the 3 individual features I have stated do as 3 individual chairs… with the right money, this chair could be customised for Dylan. Would he ever get anything like this if we don’t raise the money ourselves… simple answer NO!

This is why we will continue to fundraise, until my boy has the life he deserves we will not stop.

From the bottom of my heart, I thank you all truly and sincerely for supporting me in doing the most I can for my precious child, and wish you all love and luck for LOTS of sponsorship!

If anyone would like to join us in any of the fundraising events (or would like to arrange your own), then please contact Kerry directly.

Donate2Dylan