Hi my name is Omari and I’m 5yrs old, I’m a very happy-smiley boy unless there’s something wrong! My mum always tells people that I have very expressive facial expressions. I communicate this way to get what I want mainly but also to show when I’m unhappy, such as when I have a full pad, feeling bored or feeling hungry or thirsty. But generally I am a sociable little boy who likes to flirt with the opposite sex./p>

I was born a healthy baby, reaching all my milestones until I reached the age of one, it all stopped and my parents needed to find out why. They sought advice from my Health Visitor who referred me to my GP who eventually referred me to the Metabolic Team at the hospital who ran tests. Amongst other things this showed that my brain function had deteriorated. At this stage I still didn’t have a diagnosis. Eight months down the line I started having breathing problems, I was rushed through A&E and my parents were told my vocal cords weren’t coordinating. I was sedated and put on ICU where I lived for four months regaining my strength. Through all this I regressed and could no longer crawl or pull myself up to stand. I left the hospital with a new scar on my thigh from where the surgeon had performed a skin and muscle biopsy, a tracheostomy and a ventilator to assist my breathing along with a cocktail of medicines, which I have to take daily.

At home a lot of things changed, I was sent home with a new cot which was the same as the ones at the hospital; blue with high sides and I didn’t like my ventilator, I kept pulling it off and it would make a really loud noise which had my parents rushing in to check on me, but I was fine so I didn’t have to use it for long. Because of my tracheostomy my parents had to do some training and to this day I have to have my Velcro tapes changed daily and have my trachy changed weekly, but they are professionals now which makes things a little easier on a day to day basis.