By Sarah Ward via SWNS
A 13-year-old boy suffers from an illness that makes him violently sick every five minutes.
Josh Wright has no idea what the future holds but hopes to become a surgeon.
The teenager sometimes cannot speak after being hit by a two-day-long bout of vomiting.
Medics do not know what the prognosis is for the condition and his family worries about how much school he has missed.
His mom, Julie, was convinced the illness was more than a sick bug after Josh was first hospitalized aged one.
The toddler was spewing constantly and couldn't keep fluids down but medics couldn't find anything wrong and Josh was back to normal in the morning.
Over the next four years, his episodes of sickness continued and Julie, from Edinburgh, Scotland, began to keep a log.
She discovered he was being sick every 12 weeks and would start vomiting during the night and be sick every five minutes until morning.
Julie said: “We kept getting told it was just a bug.
"Finally, desperate, I searched Google which suggested Cyclical Vomiting Syndrome (CVS).
"It was like the sun coming up.
"Josh underwent countless tests including blood, MRIs and a barium meal.
"After these were all clear they finally confirmed the CVS diagnosis.
“It was great having a name for Josh’s condition but we were then told there is no cure.
"It was devastating.
"Josh has tried lots of different medicines to try and stop his episodes, but nothing works.
"His pattern has changed over the years and we are now in hospital every six weeks. It feels never-ending.
“Once Josh’s episode starts he is taken into hospital for IV fluids and anti-sick medication.
"During his episode, 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 young and couldn’t talk, we would use notes on his phone to communicate and he would type “I’m sad."
"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."
The family has found ways to mitigate the disappointment that Josh experiences when something he looks forward to has to be canceled because of his illness.
Julie said: “At present, he only attends around 75 percent 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 about what kind of job will he be able to get that allows for as much time off as he may need.
"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 percent 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.”
Josh and his family are sharing their story as part of Edinburgh Children’s Hospital Charity’s Never Alone appeal, which is raising funds to help children living with rare and long-term conditions to have a positive hospital journey.
To donate, visit here.
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