Young ambassador Evie battles for children despite her illness

Evie Addelman is a remarkable young girl. For the last four years she has battled the debilitating bowel condition Crohn’s Disease, but a smile is never far from her lips.

And rather than feel sorry for herself, 12-year-old Evie spends any time she is not in hospital helping others, raising awareness of the condition through her blog and fund-raising for research into the disease through her charity Evie’s Way.

But despite having to be rushed into hospital this week and put on an eight-week liquid diet, Evie was determined to take part in World Inflammatory Bowel Disease Awareness Day which takes place tomorrow, to highlight the importance of talking about the condition.

“I want to continue to raise awareness, especially to stop young Inflammatory Bowel Disease sufferers from feeling alone,” says the brave girl.

“I want them to know that someone is there for them.”

Evie’s current battle is to try to get schools not to penalise children with chronic illnesses when looking at attendance because only those with 100 per cent attendance get certificates and praise, something that Evie believes is unfair on pupils like her.

“I especially want to focus on attendance for those who won’t achieve 100 per cent attendance but to be recognised for the resilience and strength”.

Evie was a much longed-for baby after her parents struggled to conceive after father Robert had undergone cancer treatment for leukaemia as a child.

Both Evie and her older brother Sam, 18, were born through fertility treatment, and Evie was conceived at their last attempt.

“She really was our miracle child,” says mum Ruth.

“The nurse said to my mum, ‘This has to be a girl, she is one strong cookie and not moving for no one!,. Mum says the nurse was spot on about me, I am one tough cookie,” says Evie.

But in 2011 Evie started to suffer stomach cramps, mouth ulcers, excessive wind and needing to go to the toilet more often than usual.

“I’d received a call from school saying Evie wasn’t concentrating in lessons. I asked her what was wrong when she got home and she said she had tummy ache,” explains Ruth from Alwoodley.

“The doctor didn’t really seem to take it that seriously. They just said children get tummy aches and dismissed it.” But it was when Ruth took Evie to buy a new swimming costume that she really realised how poorly her daughter was.

“The swimsuit just hung off her, her tummy was distended and her arms were skin and bone. I felt terrible that I had missed what was happening to my little girl.”

They went back to the GP who did blood tests and within four hours telephoned and said Evie needed to go to hospital immediately. But at hospital no one seemed to take her seriously.

“They were very dismissive despite the blood tests, but Rob wasn’t taking no for an answer. He had struggled to get diagnosed with leukaemia and he didn’t want the same for Evie,” says Ruth. “We knew there was something really wrong with her. She had stopped talking and had no energy – I really thought she was going to die.”

After convincing them to give Evie an ultrasound the doctors started to take her seriously.

“Things then really started to move. They even mentioned that she could have bowel cancer,” says Ruth. “So when she had an endoscopy and colonoscopy and we were told she had Crohn’s Disease we were relieved. But I think I was naive. I thought they’d give her some tablets and that would be that. I didn’t realise that this was something that would effect all of our lives so much. You can’t control Crohn’s Disease. You can help it but you never know when it might strike.”

Evie has been named a Crohn’s and Colitis UK Community ambassador. She has worked with Leeds City Council to create a guide for schools on how to help children with health needs.

“I’m very lucky to live in ‘Child Friendly Leeds’ and I have been working with Children’s Services raising awareness in schools for children and young people with complex health needs,” says Evie.

A friend of Ruth’s set up a Facebook page and twitter account for Evie’s charity, Evie’s Way.

“It really helped her,” says Ruth, “It gave her something else to concentrate on other than her illness.” In the last few years she has raised thousands of pounds for the Crohn’s and Colitis UK including two fashion shows with support from House of Fraser.

“She stood up in front of more than 300 people and told them about her condition. I could not have been prouder,” says Ruth,

As well as a Community Ambassador Evie has won a number of other awards including Yorkshire Child of Courage.

When Evie’s condition flares up she has to go on a liquid diet and sometimes has to be tube fed as a result. She is a lot of pain and struggles to join in with her peers when it comes to sports. But she loves dancing and Little Mix is her favourite band.

“She does have bad days and says she just wants to be normal, but then we say ‘what’s normal?’ and we just remind her of all the amazing things she’s done and people she has got to meet and she just gets on with it and always with a smile. We are so proud of her.”

And Evie has a message she want to pass on: “Without research my dad wouldn’t have survived. Without research my brother and I wouldn’t be here. Without research we can’t help people like me who are struggling with Crohn’s.

“I want to raise as much money as I can to help fight Crohn’s for people like me.”

Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease, affecting more than 300,000 people in the UK.

Yet it is largely a hidden disease, and one that causes stigma, fear and isolation – it’s thought that many people with the condition go undiagnosed and suffer in silence.

Symptoms include: Diarrhoea, cramping, fatigue weight loss and mouth ulcers.

World Inflammatory Bowel Disease Awareness Day takes place tomorrow.

For more information on the condition visit www.crohnsandcolitis.org.uk

To find out more about Evie’s work visit www.facebook.com/eviesway or follow her on Twitter @EviesWay