THE parents of a Rossendale boy who battled a deadly syndrome for more than a decade have urged people to sign a petition calling for the NHS to treat ultra-rare diseases.

Elizabeth and Jason Heath, whose son Jack died last June after fighting MPS II Hunter syndrome for 11 years, said the current scoring system for NHS treatment was “biased”.

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Jack, of Cotman Close, Bacup, was told he was unlikely to reach the age of 10 when he was diagnosed in 2002, but lived until he was 13.

The MPS Society, which indirectly funded Enzyme Replacement Therapy for Jack, is also backing the petition.

A spokeswoman for the charity said: “We want to reinstate the highly specialised services and ultra-orphan drug appraisal process for children and adults with ultra-rare diseases that the NHS dismantled on April 1, 2013.

“Through dialogue with Jeremy Hunt and patients’ constituency MPs, we advised NHS England that reorganisation would fail people in England with with ultra-rare diseases and sadly how right we are.”

Jack’s illness left him deaf, dumb, incontinent, confined to a wheelchair and in need of 24-hour care. More than 250 people turned up at the former Holy Trinity CE Primary School, Stacksteads, and Tor View Community Special School, Haslingden, pupil’s funeral.

The petition, which currently has almost 6,700 signatures, reads: “We have started a petition about the discriminatory process set by NHS England that denies access to treatments for ultra-rare disease due to its biased scoring.

“Whilst new therapies are expensive for children and adults with ultra-orphan diseases, the numbers affected in England are usually in the tens and never total more than 500 affected individuals.

“These ultra-rare diseases affect many organs of the body and usually result in death in childhood or early adulthood.

“Today, even though the European Medicines Agency gave marketing approval for an Enzyme Replacement Therapy for children and young adults with Morquio’s syndrome in April 2014 - and the health departments in France, Germany, Austria, Italy and even Turkey are paying for Morquio’s sufferers to receive Enzyme Replacement Therapy - 77 people in England are denied Enzyme Replacement Therapy and have to be treated at home.”

An NHS England spokesman refused to comment.

To sign, visit you.38degrees.org.uk/petitions/nhs-england-s-scorecard-discriminates-against-treating-ultra-rare-diseases