Tommy was born 6 weeks prem was daignosed with hearing loss at birth at 4 weeks old diagnosed with hyperhtrodism then at 5 weeks had a op to repair pylic stenois. The following year followed with development delay, small stature , dyamorphic features, eye problems - nystagmus,anisocoria and partial aniridina, hypermobility , sialorrhoea. At a year old, Tommy was diagnosed with Hypertrophic Cardiomynophy with can cause sudden death the heart. We have spent the past 3 and a half years fighting for answers for Tommy and he has had constant test and will do in the foreseeable future , at present we have concerns with Tommy's oxygen levels and are fighting for a diagnosis of possible dystoina attacks. He goes through many days of weakness due to his heart and also many nights of pain due to his muscle/joint weaknesses. Tommy also has speech delay. But he is a very happy cheerful boy despite his everyday issues he has to fight.