A mother and her two young girls who all suffer from the same life-threatening condition have raised thousands in cash for the doctors who saved their lives.

Cheryl East, 37, and her daughters Jocey, four, and Ellissia, five, have been united in their fight against a rare genetic disorder, which causes vital organs to fail, since Jocey was diagnosed at just two weeks old.

Jocey is at extra risk due to an additional fault in her genes. She is one of only 65 people in the world to have suffered from the condition called Deletion 1 syndrome.

She has come close to losing her life three times due to the excessive blood loss it has caused.

Despite spending most of her life at Great Ormond Street Hospital, brave Jocey has been at home in Villa Close, Chalk, for a year now, something her mother described as “a miracle”.

"As early as three weeks old, Jocey had to have an operation, but there is just no research on it because it’s so rare” - Cheryl

Cheryl said: “When I had Jocey, I just knew that something wasn’t right. As early as three weeks old, Jocey had to have an operation, but there is just no research on it because it’s so rare.”

The disease can cause litres of blood to pour from their bodies at any time.

For Jocey, it could mean that she needs permanent feeding via a tube to the heart to get liquid nutrients into the bloodstream, and a transplant of the oesophagus, stomach, small bowel, pancreas, and large bowel.

The stress of dealing with her daughters’ illness meant Cheryl failed to take notice of her own symptoms. She has been diagnosed with neuropathic intestinal pseudo obstruction – which both her daughters also suffer from.

It means Jocey and her mum both have a bag attached to their small bowel as the large bowel does not work.

Ellissia does not yet have a bag. She was diagnosed in November after she started showing similar symptoms to her mother and sister. She takes medication so food is not processed by the bowel.

Cheryl said. “Looking back, there was something not right with my own health, but I wasn’t taking any notice of it because of the situation and being in hospital for my daughter all the time.”

“She is just doing so well. We have to accept that things could go back to the way they were, but we have to be positive” - Cheryl

Cheryl has just come out of hospital after treatment for her condition.

Despite their grave misfortune, Cheryl and her family are defying all odds. She added: “Jocey is doing fabulously. We are taking every day as it comes but each day we feel she is getting stronger.

“She is just doing so well. We have to accept that things could go back to the way they were, but we have to be positive.”

Ellissia is losing weight and looking pale.

Cheryl said: “When she goes to parties, she has started wanting to put on make-up, even though she is only five.”

From coffee mornings and fun days to quiz nights and psychic events, residents from across Gravesham and beyond have come together in support of the family, raising £5,050 for the Little Buds Fund at Darent Valley Hospital which supports antenatal and postnatal care.

The family is hoping to raise even more money for the hospital ward.

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