parentsofdisabledchildren Report post Posted November 19, 2009 Hello, We are Daniel and Lucy we are parents to a little boy of 2.5 years old. He is undergoing assement for ADHD and Aspergers. My son was born and was in special care for over 2 weeks with respitory distress and throughout the first year of his life he was always ill and had failure to thrive. Just after his first birthday our son was dianossed with a very rare condition called cystinosis which is a very rare metabolic condition with only 2000 people world wide having this. Since this diagnosis he is under several doctors and one of which was the Child development centre who have raised several concerns in relation to this unusal and odd behaviours. He is due to go along to some monitoring sessions for a period of 12 weeks. We are very sure that something is wrong with him as he is a little diffrent So aswell as his medical condition we will also have to accept he is going to require other support. Previously we also set up a website called www.parentsofdisabledchildren.co.uk because we were just so fed up of the system failing people. I hope our forum can benefit members here as well in regards to benefits and education. But this forum is excellent for help in regards to the condition. To the forum admin i can add a link to your site in our useful guide if you dont mind? Hope to make some great freinds on here Quote Share this post Link to post Share on other sites
Martin Howe Report post Posted November 20, 2009 Hello and welcome to the forum; there's a lot of kindness and knowledge from people on this forum, hope it helps you too. Quote Share this post Link to post Share on other sites
