Hi

For a long time I have wanted to write Ben's story so with loads of help from Adrian I have written Ben a website of his own it's called www.allaboutben.co.uk

There's lots of pictures of Ben on there and all the things he gets up to and I am still in the process of writing his story.

Please have a look and feel free to register there also, part of the reason being it would be great to raise awareness of canavan disease in the uk.

Sally x

Hi

Thanks Sylvia for your lovely comments in Ben's guest book, I am glad you are happy about the film I have watched it many times and so have our family it's great to see you all and Kevin.

Please do add yourselves to the Canavan Families section of the site. I really do hope in the UK to raise awareness of Canavan disease and other leukodystrophies and to help other families and I think the stories of other families will help do this and strengthen Ben's website.

Sally x

Hello Sally ,

I would love to add Kevin to the Canavan affected children-site , but I don't know how .

Sylvia

hey sally

Its heidi i just went on bens site and registared Paul and harleeGrace the site is amazing and help me find more eqiptment for my kids and i loved the photos as well hope all is well

god bless Heidi

Hi Sylvia

May I ask Adrian to copy your profile and photo from this website?  I know Kevin is a real inspiration to all of us it would be great for our friends and our medical professionals to see him on Ben's website.

Best wishes

Sally Fletcher

Hello Sally ,

jour welcom to copie everything you want/need

Sylvia

Hi All,

Very pleased to see Ben on the web. Things are very similar that we have faced during the diagnosis process.

I think that page will be very fine those who are looking for some sourse of information about canavan.

Thanks for that.

Bihter (Sarp's mother)