A woman living with a rare genetic condition which has left her struggling to eat, breathe or speak has been told she is “fit to work”.
Helen Boughen lives with neurofibromatosis which has seen her undergo 16 gruelling operations over the same amount of years to remove continuous tumours growing along the nerves and all over her body.
One tumour caused complete vision loss in one of her eyes, whilst others weakened the bones in her head so she has no feelings in one side of her face.
Surgeons had to insert three metal pins in her fake eye to keep the socket in place and her hips are extremely fragile after most of the bones had to be removed in order to repair her face.
If that wasn’t bad enough, the 33 year-old from Ross-on-Wye has aspergers syndrome.
Helen received a Disability Living Allowance (DLA), but she has been told her condition does not qualify her for its replacement, Personal Independence Payments (PIP) after receiving zero points at an assessment.
Her retired mum Pauline, 62 and husband Colin, 71, from Pontshill, Herefordshire believe they have everything in their power to support their daughter to have an independent life.
Mrs Boughen is devastated for Helen, she told Mirror Online: "When this happens after all she has been through you think, give us a chance.
"Give us a break, rather than piling it on. I want to show how unfair it is that people like Helen are treated like this. It is cruel.
"It envelopes you in sadness. How awful is it that in this country it has come to this?
"It was so rotten for Helen. As a mother you think: What else can I do?"
Helen currently lives in a flat which she managed to buy from the money from her DLA (£928) and a car which was used for regular hospital visits.
Despite trying to secure a job her hundreds of interviews have, so far, been unsuccessful. One reason for this is, according to Pauline, the jobcentre has sent her for waitressing roles and work behind bars which Helen is unable to take "because she does not have the strength".
Pauline added: "I also want people to know that not everyone who cannot get a job is doing it because they are lazy.
"It is so emotional and wearing, especially when you are also dealing with many other health issues."
Determined not to give up the family escalated the DWP decision to MP Jesse Norman and their local paper.
The trick worked, Helen has now been granted £87 a week after her case was reconsidered, although she is still £70 short of her previous payment.
Pauline has decided not to make another appeal.
She said: "We are so tired of this. We cannot fight any more. It has been going on for five months already and that has drained us enough.
"We should not have had to have gone through this awfulness. We could appeal, but Helen told me: 'No, I cannot do this'.
"Helen has a big meeting on Friday about her ongoing medication and she isn't feeling that great.
"There is slight relief now after months of stress, but then it hits you again.
"I hope the publicity will give other people the confidence to appeal and show where they can go for help. It's really hard.
"If Helen had been on her own she would not have done anything about this because she would not have known where to start."
A DWP spokesperson said: "We are committed to ensuring that people get the support they are entitled to.
"After revisiting the case the decision has been made to award Ms. Boughen the enhanced daily living component of PIP - an increase of over £30 per week from her DLA entitlement.
“Decisions are made based on all the evidence we receive at the time. If someone disagrees with a decision, they can appeal and provide further evidence through a mandatory reconsideration.”
But Pauline wasn’t happy with the response. She argued: “What they are now saying is contradicting what they have told us.
“We need to wait until we get a letter from the Job Centre to know exactly what she’s getting but our calculations are that she’s over £70 a week down.
“They have told her she is not getting mobility support because the assessor said she can walk 200 metres. She can, but it’s incredibly hard work and it hurts her.
"I can only think they have changed their stance after the publicity but from what we are told, she is still getting less than she was.
"It should never have come to this in the first place."
Helen Boughen has had to endure several courses of radiotherapy because of her condition.
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