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A young woman with a rare genetic condition which left her body riddled with tumours has vowed to fight a Department for Work and Pension's decision to stop paying her a disability benefit she relies upon.

Pearl Kelly, from Orrell Park, has neurofibromatosis which causes tumours to grow along her nerves.

She underwent her first operation aged five and has had around 20 operations over the last 15 years.

When she was eight doctors fused her spine to help fight the rare genetic disease. The operation stopped her from growing past 4ft 2ins.

Pearl, now 21, also suffers from other health conditions such as curvature of the spine, depression, anxiety, rheumatoid arthritis, osteoporosis, vertigo and heart problems.

Pearl told the ECHO that she cannot walk without using crutches and cannot work.

She has now been told the DWP has decided to stop her personal independence payment (PIP) - a benefit awarded to people to help them with the added costs of disability.

Pearl, who has contested the decision, told the ECHO that she needs the benefit, worth around £450 a month, to help with the costs of travelling to hospitals across the North West.

She is now waiting to appear before a full appeal tribunal when she hopes to overturn the decision.

(Image: Liverpool Echo)

She said: "I am an out-patient at several hospitals across Liverpool and Manchester. I have to use public transport to travel some fairly long distances. Sometimes my appointment might be first thing in the morning so I have to travel at peak times.

"And there are the cups of coffee and snacks while I am waiting around. Just the odd coffee and a biscuit. Although I receive another benefit I need the PIP money too."

Pearl told the ECHO that she has spent a year filling out massive forms to become eligible for the PIP benefit.

She said: "I first applied in April 2015 and became eligible in March the following year. Some of the forms I had to fill out were nearly 60 pages long."

Athough the benefit is not means tested, claimants are medically assessed by private companies who employ health professionals. Claimants need to secure eight points to be eligible for the benefit.

Pearl said: "I have found the whole process bewildeirng. I am someone that can can't walk from one room to another without becoming short of breath. How can they say I am not eligible."

Pearl said that her childhood was complicated by her illness and that bullies made things worse.

She said: "I hated school because of the bullying. I was picked on because I was different. In the end though I just felt sorry for the bullies because they were so ignorant. "

As a teenager she relied upon crutches to move around but still managed to get 11 GCSEs at grade C or above at Walton secondary Archbishop Beck. The school played its part by offering her assistance upstairs, helping carry her bags and providing extra comfy chairs.

Pearl later spent two years studying at Hugh Baird College but missed large chunks of the course to poor health.

Pearl, an Everton FC fan , once collapsed on the way to Goodison to watch the blues play.

She said: "I had an supraventricular attack which meant my heart was beating too fast. I ended up in hospital that night. I am still a big Everton fan but I rarely make it to Goodison due to my poor health. Sometimes I think its for the best considering Everton's form over the last season."

Pearl said that she was determined to fight the DWP.

She said: "I need this money and I think I am entitled to it. I get out of breath walking from one room to another and cannot walk without crutches.

"Travelling around the North West on public transport is stressful and expensive. I need help. I am obviously hoping that the decision will be overturned at a tribunal later this year."

A DWP spokesperson said: “PIP takes a much wider look at the way a person’s health condition or disability impacts them on a daily basis. The quality of assessments has risen year on year since 2015, but one person’s poor experience is one too many.

“We’re committed to continuously improving assessments and have announced we’re piloting the video recording of PIP assessments with a view to rolling this out widely. Under PIP 30% of claimants receive the highest rate of support, compared to 15% under DLA (Disability Living Allowance)."