My son Cameron who is age 7 suffers from a rare genetic disorder called Joubert Syndrome. This affects his speech, balance, coordination, and breathing and also has developmental delay.

Alongside this he suffers from rhythmic movement disorder and sleep apnoea for which he requires oxygen overnight.

Joubert Syndrome is a very rare condition that affects around 1 in 100,000 people. There are only 4 known cases in Wales and around 500 in the world.
He has overcome many obstacles in his life already, despite being told by doctors that he may not achieve many of his milestones he has been able to sit independently since the age of 2. He is able to feed himself using his hands, but has great difficulty when trying to use cutlery. Cameron is currently unable to talk but he can sign using sign-along and has been provided with a communication aid from Rookwood. Cameron can also weight bear through his legs and can step his feet with a lot of support.

Despite all of these barriers he has faced and overcome, he is always smiling, has a wicked sense of humour and loves being involved in everything. He recently won the Child of Courage award for the second time.
Cameron’s mother and I are no longer together. All equipment and aids that Cameron has been issued with are at his mother’s house. Cameron lives with me every weekend, which is proving difficult as Cameron gets older.

The reasons for me setting up this page is to purchase equipment for use at my house. I would like to be able to provide a safe environment and make life more enjoyable for him. This equipment would allow me to spend more time with Cameron as a parent and not a carer.

We are planning numerous fund raising events and will keep this post updated. I would really appreciate your help with the fundraising.
Any advice and questions are also welcome. Thank You.