An Edinburgh mum has shared a heartbreaking insight into her son's rare sickness condition, which sees him hospitalised almost every six weeks.
Josh Wright, 13, was diagnosed with Cyclical Vomiting Syndrome (CVS) years ago, a rare illness that can cause him to throw up every five minutes and require urgent medical attention.
Speaking about the condition, his mum Julie shared that she is often left devastated when her son asks 'Why me?', with the symptoms known to be incurable.
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A Hibs-mad teen, Josh has spent a huge amount of his childhood in the Edinburgh Sick Kids, as the CVS can see him vomit blood and be unable to talk due to a build up of saliva. Often needing to communicate via written notes, the episodes can carry on for an entire night, with the family desperately hoping he will grow out of it.
Speaking to the Record, Julie explained that because the cause of the condition is unknown, she feels his future could be "uncertain."
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 per cent 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 per cent 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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