Raising money for various disability specific items and equipment
My name is Lewis Herbert and I was born in 2002. I was diagnosed with West Syndrome at 3 months of age.
This has since developed into a condition called Lennox Gastaut Syndrome (LGS). LGS is a rare and extremely severe form of epilepsy with multiple seizure types. It causes severe global developmental delay.
I can have 100’s of different seizures every day and my condition is resistant to any medication or therapies which have been tried.
I am severely disabled and unable to do anything for myself. I rely on my Mummy and Daddy for all my personal care needs. I require 24hr care on a daily basis and Mummy and Daddy have had to give up work to look after me!.
I cannot walk or talk, but enjoy being out of my wheelchair and wriggling about (in my own unique style) on my soft mats.
I absolutely love multi-sensory environments with lots of lights and sounds (but they must be well padded so I don’t hurt myself!). These environments make me feel happy, content and relaxed. I also love listening to Beyonce!.
I live with my Mummy, Daddy, Sister and younger Brother. I have a wonderful family and lots of people who love me and I love them.
I love listening to music and looking at trees blowing in the wind. Mummy says I have beautiful eyes and this is how I communicate my feelings!. She says my eyes are the gateway to my soul.
I get cross when Mummy and Daddy kiss me, but it's all good fun!.
My favourite film is finding Nemo and Lion King.
PS.. To find out what's happening in the world of Lewis visit my latest news and events page
Lewis Robert Herbert was born on the 12th November 2002 at 12:20am weighing a healthy 8.2lbs.
After keeping us waiting for a 34 hour labour and being rushed out by the consultant as he was getting distressed. Our 1st baby was here and we couldn't wait to start our family life. The next chapter for Gary & I. He was the most beautiful thing we had ever seen. We had so many dreams and hopes for our little boy. Read more.. Our Special Boy
The amazingly thoughtful, kind, and talented Jonny Cooke has written and produced a song for me.
How cool am I to have a song all of my own!.
This is so personal and special to me, and my Mummy and Daddy. Read more.. A Song for Lewis by Jonny Cooke
To get involved and help fundraising for Lewis please contact us