Hello,
My name is Lucy.
I am the mother of a little boy called Euan who has a rare disorder called cystinosis.
There are about 2000 people worldwide with his condition and its a metabolic condition which also effects his eyes and brain development and bones.
Me and my partner felt very alone and we decided to set up a website where members could recieve and give advice with all things related to disabled and special needs children our site is ww.parentsofdisabledchildren.co.uk
We do not see us as a rival to this site in anyway and i think what this site offers is excellent and ive also sent a few of our members this way

Its so nice to know we are not alone with our feelings and the battles we face as parents and i hope to stick around here and offer advice where i can.

Would be nice to see some of you over at our site as well your all welcome.