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About parentsofdisabledchildren

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  1. Hi, Yes my son has a rare genetic diesease which only 2000 people world wide have so as you can imagines its quite a lonely place to be:-) Because it has been so lonely we have had to learn alot and fight the system so many times. So we just thought if the system is treating us like this,they are doing this to so many. Its nice to have a forum here that have people who have fought the system and are prepared to do so. It would be really good to have some of you pro's come over as well and give everybody some advice. And if any members are also having any issues for them to come ove
  2. Hello, Thanks for taking the time to read my post. My name is Daniel and i am a father of a 2 year old disabled boy. My son has a very rare genetic disorder called Cystinosis and it was a very hard time just after diagnosis dealing with it. However we adopted an attitude that the condition would not defeat us and we would do all we could to help others. We have set up a forum which is 100% non profit and we do it because we really want to help people. The forum is: www.parentsofdisabledchildren.co.uk On the forum its general discussion and advice such as benef
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