At 3 years of age he can still not walk or talk, his communicative skills are going to be a struggle and may never come, but physically although his body is weaker than you can imagine and his legs have little to no tone, it is possible Grayson could find a way to move.
Grayson unlike other boys such as my Oli does not get to enjoy going to the park or playing as he is not capable, his weeks are made up of hours of physiotherapy, this is where the trike will help him tremendously! You see the trike will allow him to strengthen his legs and core muscles whilst he is having fun like every other little boy and girl, he will be able to go to the park with his little sister, side by side on their trikes. He wont have to peddle as the special trike will do it for him.
He's a , which is the term given to children/adults have “a Syndrome without a Name” Grayson has brain damage, severe Global Developmental Delay and is physically and mentally disabled. He has a rare genetic condition that may never be found.
You probably won’t have heard of many children like Grayson who don’t have a diagnosis as they are rare, they are not publicised about as they don’t have a “fashionable” condition, this doesn’t make them less important or worthy of support and treatment but unfortunately more often than not this is what happens.
Grayson's mum Kara has found some fantastic support thanks to SWAN UK, they are a charity without any government funding set up by the Genetic Alliance to give families like Kara's support and a voice for their special babies. In the past 6 months they have helped her family and Grayson a great deal, supporting them with help/information, introducing them to families in the same situations, sending support/love in tough times and she says would be lost without them.
Kara has decided to do something to show her support and one way that to do that is to go about getting people's attention. She has a head full of hair, beautiful long brown hair which SHE IS GOING TO SHAVE OFF to help raise money for the following...
1. A 3rd will be donated to SWAN UK, as Kara has said, the support they have given her family as a whole this past 6 mths has been unmeasurable, she has found other parents who understand her day-to-day, who can help her fight through the hard times and smile with her on the good days. SWAN are completely reliant on donations and that’s she's chosen them to be her main charity.
2. The 2nd 3rd shall be given to Cerebra, Cerebra helps Children like Grayson with brain related injuries. Cerebra is a unique charity set up to help improve the lives of children with brain related conditions through research, education and directly supporting the children and their carers. They do not receive any help from the government and rely entirely on the generosity of their supporters.
3. Lastly the final 3rd of donations shall do something greatly important to them. They are fundraising for Grayson to have a TOMCAT trike. The trike estimated quote is £1800, this is more than she can afford on her own.
And if that's not enough, Kara is donating that hair to an amazing charity called The Little Princess Trust to makes wigs for children who have lost their hair to cancer. I can not admire Kara enough for doing this, it is true that once you become a parent you would do anything for your children.
The day that Kara is having her hair shaved is being turned into a fun day - Grayson's Great Fun Day. Which brings me on to some of the ways you can help! If like me you just cant help but to want to help after reading his story and his mother's pledge to support these charities which have and are helping her so much.
- Firstly and the most simple, head over to Grayson’s Great Fun Day Virgin Money Page, where you can donate anything between £1-£1 million
- Secondly – They are running 2 raffles on the Funday, one for large prizes and one for smaller, if you feel you have something to offer please do contact Kara at any prize would be greatly appreciated and all donations shall be shared on various posts on my blog and receive the recognition they deserve. (If you've donated because you've seen a plea from me I would be more then happy to share about it via my blog, & page!)
- Thirdly – If you are in Kent, can you help them on the day? The event is being held in Bishopbourne, Canterbury on the 26th August 2012. They are on the look out for all types of entertainment and volunteers –
- Fourthly – help advertise this page on the NET, through your blog/website/twitter or Facebook, social media is an awesome way of getting info out.
- Lastly – Come join them on the day. If you want more details then feel free to email Kara –