Video report by Jon Hill
The family of a 15-year-old girl who's been forced to miss school and exams have accused the NHS of sacrificing her health by withdrawing a drug treatment that allowed her to lead a near-normal life.
Evie Holden from Bradford has lost so much weight due to a rare disorder that stops her from eating most everyday foods, she now has to wear clothes meant for an 11-year-old - she has almost constant sickness.
The NHS used to pay for a drug costing several thousand pounds a year but it pulled the plug on the treatment and Evie's family and MP say she's now paying the price as the innocent victim of health care rationing.
Evie has a rare disorder called congenital sucrase-isomaltase deficiency (CSID). It affects around one in 5,000 people and means she cannot digest certain sugars found in fruit and grains.
Her daily food intake is largely limited to chicken and vegetables - and she suffers almost daily bouts of sickness, stomach cramps and diarrhoea.
Until four years ago, her condition was kept under control by the drug Sucraid which mimics the natural enzymes used in the digestion of sugars and carbohydrates.
Her treatment cost the NHS several thousand pounds a year.
In 2018, there were temporary manufacturing problems at the US drug-makers, but when the medicine returned to production, Evie was no longer prescribed Sucraid.
Since then, she has lost more than one-and-half stones in weight and is often housebound because of her condition.
Evie's mum is pleading for the NHS to help her daughter.
Her mother Victoria said: "The fact that she's missing out on so much and the fact that she might not get to be what she wants to be in life because of somebody holding her back because of funding.
"Because of the cost of some medication. I'd sell everything, I'd do everything to get this medication for her because the difference in her, if they told me today that they would give her the medication and you came back next week the difference in her would be unbelievable."
Evie said: "I started my GCSEs in Year 9, I've missed most of my classes because of it. I missed a GCSE last week because I was in hospital and I've missed most of this term, I think I've had about 4 full days at school this term because of my stomach."
Evie's doctors at Bradford Royal Infirmary have applied to NHS England to fund Sucraid for her and a small number of other patients with similar conditions, but the application was rejected.
NHS England says it does not routinely fund the treatment and Sucraid is not currently licensed for use in the UK.
But the Bradford South MP Judith Cummins, who has taken up the case, has accused NHS England of health rationing and says she is asking the Health Secretary to intervene personally in the case.
"I think it is unfair when you are rationing health care to a young teenage girl and changing her life so much," she said.
"She had a carefree life of a normal teenager and now she's often housebound and not able to attend school."
In a statement, the Chief Medical Officer for Bradford Teaching Hospitals NHS Foundation Trust, Dr Ray Smith, said: “We sympathise with Evie’s situation and have applied to NHS England for funding in support of her treatment, which is not routinely available on the NHS.
“We are working with NHS England to try and find a solution which benefits Evie and other patients with similar conditions.
“In the meantime, we continue to provide Evie with the best care we can and are meeting with her family to explain our next steps.”