Ebany Caesar is battling with a rare disease that robs her body of the ‘glue’ that holds her joints and organs together and leaves her in permanent pain. The 25-year-old has lived with the pain since she was 14 when she spent much of her school years in hospital—long before it was diagnosed in 2009 as Ehlers Danlos syndrome.
Now the people of London’s East End are rallying behind the family from Poplar to raise funds to send her to America for vital research treatment.
A fundraising campaign began with two events, a cabaret night last month at Mile End’s New Globe pub and a Caribbean fun day on Sunday on the Isle of Dogs.
“I just want a little bit of what ‘normal’ is,” Ebony told the East London Advertiser.
“I’ll never be 100 per cent—but I’m 25 and don’t remember the last time I went out for a walk on my own.
“To me, just going out to walk is freedom.”
Her story was first told in the Advertiser in 2010, after the illness was diagnosed.
Ehlers Danlos syndrome is a connective tissue disorder with a shortage or absence of collagen—the ‘glue’ that keeps the body lubricated and together, one of the only parts that can’t be replaced.
Ebony lived a normal life till she was 14, a bright pupil at Stepney’s Bishop Challoner School excelling in academic studies and sport.
Her mum June Caesar, 57, remembers the “happy-go-lucky, active, popular” child who loved her studies.
“Then this illness spoilt it all,” June recalls. “I wanted Ebony to be out their with the rest of her friends. She missed a lot of school and spent so much time in hospital. It was a nightmare, so unfair.”
Ebony was constantly off school and even took her GCSEs in the Royal London Hospital—but was too ill to complete more than two exams.
The doctors didn’t know what was wrong at first and treated her for a burst cyst and then a hernia.
But Ebony insists: “These were the symptoms and not the cause. They weren’t sure what was causing these things.”
She briefly recovered and went to Tower Hamlets College and studied to be a professional beautician, but after six months had a seizure in class and was back in hospital, when her rare condition was finally diagnosed.
There is no cure for the syndrome, the family has been told.
But there is more treatment and research in the US. A new centre for research has opened in Baltimore, offering clinical care and education for physicians.
“They may not be able to put the collagen back,” Ebony says philosophically. “But they are trying to make something that performs like it in your body.
“It’s only research at the moment, but if you’re over there and put yourself forward with a severe case like mine, they say they’ll take me. I’m happy to be the guinea pig.”
The family have raised £5,000 so far with fundraising events and donations through their Facebook page from wellwishers.
Ebony’s older sister Joy Caesar, who organised Sunday’s Caribbean fun day, said: “The community has been brilliant—friends have seen my mum and me cope with Ebony’s illness for years and got together to start fundraising. I just hope people can help.”
They raised £820 with the Caribbean event staged at Millwall’s Samuda centre. But there’s a long way to go to reach the £50,000 target for Ebony.
Joy has set up a Help my sister appeal on the ‘Go Fund Me’ website.
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