LITTLE Harry Beardsell suffers from an the extremely rare condition cystinosis, of which there are just 200,000 recorded cases in the developed world.
The five-year-old from Canvey has an incurable disease which attacks his internal organs, specifically his kidneys, and means he will need medical check-ups for his entire life.
His mum, Nicola Watts, 33, knew something was wrong when Harry was just nine months old.
“He kept being very ill,” she explains.
“He was drinking loads of water, always throwing up, projectile vomiting.
“The doctors didn’t want to know.
“They gave him antibiotics and told me they knew how to do their job. But I had a gut feeling all along.”
It was just before his first birthday when Harry became so ill he was rushed to Southend Hospital.
Tests revealed his levels of potassium and vital electrolytes were dangerously low and doctors sent him to London’s heart and lung specialists at Royal Brompton Hospital.
More tests ruled our cystic fibrosis and other ailments, before one junior doctor started to suspect something far more rare.
Harry was moved again, this time to Westminster’s Evelina Hospital.
It was the day after his first birthday that doctors dropped the bombshell.
“They told me it was cystinosis, a longterm terminal illness, and all I heard was that my child was going to die,” Nicola explains.
“I went into a bubble and didn’t hear anything else.
“I was in panic mode as they tried to tell me they could keep him stable with medication and regular check-ups.”
The oldest known surviving sufferer of cystinosis is just 47 years old.
The condition attacks the kidney, causing extreme thirst, which creates a domino effect where the sufferer urinates out salts vital to our health.
This leads to knock-on symptoms, such as crystals forming in the eye’s cornea, making the sufferer super sensitive to bright light.
“Harry has to wear sunglasses and a baseball cap whenever we go out,” she says.
“The bright light can be painful for him and when we are in the living room, where we eat and play, I usually have to draw the curtains.”
A local pub, the King Canute, in Canvey, is launching a fundraiser to try to get £750 to help the family fit a special tinted window that will filter the sun’s painful rays.
“I’ve been saving for one for ages, but there’s always something I have to pay out for,” says Nicola.
“The King Canute heard about his condition and asked if there is anything they could do for him, so I told them about the window.
“It would make our lives somuch nicer.”
So rare is the disease that Harry and his family have to use social networks, such as Facebook groups, to talk to other affected families. The online community is global, with friends as far flung as America and Australia.
Harry takes 13 different types of medication every single day and has to return to the hospital for blood tests and check-ups every three weeks.
He is now eating solid food, but had previously needed a tube directly into his stomach.
In later life, the condition could lead to muscle wasting and rickets.
Nicola adds: “Harry’s got hardly any confidence and has been in and out of hospital his whole life with some horrible things happening to him.
“It takes him a long time to come round to people, but he has lots of friends who are very protective of him.
“He’s like a celebrity on Canvey.
“I have been preparing him for the fundraising day.”
But despite the rarity of the disorder, Harry’s family remain positive that medical advances could help him lead a long and fulfilling life.
“My hope for Harry is he will find someone and have children of his own one day,” she says.
“Thinking he might not want to pursue that because his own life could be short breaks my heart.”
Jenna Babaci, landlord of the King Canute pub, hosted the event on Friday.
She is no stranger to charity work, having raised thousands for good causes over the years.
Friday’s fun day, which featured stalls, inflatables, majorette displays and live bands, wasnot only to raise money for Harry’s tinted window, but also for a baby girl who is undergoing chemotherapy after being born with a brain tumour.
There were also some wacky fundraising feats, such as sponsored chest-waxing and head-shaving.
Jenna said: “We are trying to raise as much money as possible.
“It was a real community day, where we got everyone behind a good cause.
“These two Canvey children have had a difficult start to life and we don’t know how the money is going to be spent, but we are happy we can help in a little way.”
Source: Southend Standard