Raising money for various disability specific items and equipment
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.
Please click here to download my song and to donate to my appeal
A massive thanks as well to Lisa Littlejohn West and Gabriel Vanore for working with Jonny on my Song x.
Hope you like it.
Much Love Lewis x
So who is this Jonny dude ?
Originally from the UK and now living in Ireland. Jonny has been writing music for over 20 years, he has always enjoyed singing although he never picked up a guitar unti he was in his early 20's. His music falls into folk/indie/rock category all depending what mood he's in when writing a song, about everyday life, love, hurt, happiness..
More details visit Jonny Cooke's website
Back to top
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. Find out more about Me
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
To get involved and help fundraising for Lewis please contact us