The mum of a Scots schoolboy who vomits every five minutes has told how her heart breaks when he asks “why me?” during his debilitating sickness episodes. Josh Wright, 13, was diagnosed with severe Cyclical Vomiting Syndrome (CVS) which sees him hospitalised roughly every six weeks for fluids and medication during a flare up.
The Hibs-daft youngster often throws up blood and is left unable to talk due to a build up of saliva - instead being forced to communicate with his family using a notes app on his phone. The episodes often start in the middle of the night and continue until the morning, with Josh throwing up every five minutes.
But the cause of the syndrome is unknown. His mum Julie, from Portobello near Edinburgh, told how she worries about her son’s future but prays that he will one day grow out of the incurable condition.
She said: “It's such a rare condition so it was very difficult to get a diagnosis. When we finally did, but were told there is no cure, it was devastating.
“He has tried so many different medicines to try and help, but nothing works. It feels never ending. He often asks, “Why me? Why do I have this and other kids don’t?” I can see it in his eyes and it just breaks my heart.
“During his episodes, he has excess saliva and often can’t talk for up to two days. It gets to the point where he is vomiting blood. When he was younger and couldn’t talk, we would use notes on his phone to communicate and he would type 'I’m sad'.
“At present he only attends around 75% of school. We’ve spent years not telling him when he has things coming up like birthday parties, trips to the cinema or holidays because we don’t want him to be even more disappointed.
“The future is uncertain for Josh. We worry what kind of job he will be able to get. As he has grown up in the hospital, he really wants to be a surgeon but will he be able to achieve his ambition when he only attends school for 75% of the year?
“There is hope that as he gets older, he may grow out of the condition as some children do. For now, we just take every day as it comes and try to really make the most of the times when Josh is feeling well.”
Cyclical Vomiting Syndrome is rare, with only three in 100,000 children diagnosed each year. Josh and his family are supported by the Edinburgh Children’s Hospital Charity and have shared their story to help raise awareness of their invaluable work.
Edinburgh Children’s Hospital Charity is currently running its ‘Never Alone’ fundraising appeal to help children like Josh living with rare and long term conditions to have a positive hospital journey. You can help by donating here.
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