EXPERIENCE STORY

Sandra About Her Son Joshua

Joshua is 14 years old now and has been diagnosed with Chung-Jansen syndrome. He is adopted and we are in very close contact with his biological parents. Joshua’s mother also has the same syndrome. 

When Joshua was little he was too small for his age and slow on reaching milestones. He struggled with walking very far. He needed to use a buggy and for longer distances he needed a wheelchair. It got much better but since becoming a teenager his legs have began to ache again and he complains about back ache.

Joshua also has behavioural issues and has been diagnosed with ADHD. We have just started medication to help him focus. He is very forgetfull but can repeat what he has been told randomly on different days. He can develop tics very easily. 

Joshua comes across as quite bright but he struggles putting things into practice. His behaviour can be abusive and quite scary sometimes but he can also be very loving.