My DS has just been diagnosed with HCU (Homocystinuria) which is a genetic, metabolic condition. This has been a great shock and I am still trying to get my head around it, also I am mad as hell because I have been taking DS to see specialists from the age of 2 as I was worried about him not walking or talking.... why was this not tested for!!!
I wondered if anyone our there also has a DS or DD with this condition and can offer any advice, and also comfort as all I seem to be able to do is see all the horrible things on the internet.....