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NHS to fund girl's gene treatment NHS to fund girl's drug treatment
(about 5 hours later)
An eight-year-old girl with a rare degenerative condition will have her treatment funded by the NHS.An eight-year-old girl with a rare degenerative condition will have her treatment funded by the NHS.
NHS Greater Glasgow and Clyde has agreed to pay the £100,000 a year enzyme replacement therapy needed for Hayleigh Reynolds. NHS Greater Glasgow and Clyde has agreed to pay the £100,000 a year enzyme replacement therapy for Hayleigh Reynolds, after refusing to do so.
Hayleigh, from Glasgow, has Hurler Syndrome, a disorder caused by a deficiency of an enzyme required to break down substances in the body.Hayleigh, from Glasgow, has Hurler Syndrome, a disorder caused by a deficiency of an enzyme required to break down substances in the body.
Hayleigh's father Robert, 43, said: "This will change Hayleigh's life."
Funding was initially refused for the therapy which is available in England.Funding was initially refused for the therapy which is available in England.
Hayleigh's parents, Robert and Heather, who live in Barmulloch, went to the Court of Session to raise a judicial review of the initial decision. Mr Reynolds, from Barmulloch, added: "Any parent would fight for treatment for their child if they knew it was out there."
Hayleigh's mother Heather, 38, said her daughter may be able to start the treatment before Christmas.
She added: "It still hasn't sunk in yet, but it is the best news we could have hoped for."
Progressive disability
Hayleigh's parents went to the Court of Session to raise a judicial review of the initial decision.
However, the application for therapy using the drug Laronidase was looked at again by the health board, which on Friday announced its u-turn.However, the application for therapy using the drug Laronidase was looked at again by the health board, which on Friday announced its u-turn.
Hurler Syndrome, also known as mucopolysaccharidosis, occurs in infancy and causes progressive physical and mental disability. A health board spokeswoman said: "The decision has been made on the basis that the patient's treatment will be closely monitored and reviewed for effectiveness."
Hurler syndrome, also known as mucopolysaccharidosis, occurs in infancy and causes progressive physical and mental disability.
The health board said the case involved exceptional circumstances.
The spokeswoman added: "These include the fact the patient now meets four of the five inclusion criteria used by the Department of Health in England to assess eligibility for treatment with Laronidase, compared with only two in 2004.
"We also took into account the fact that another patient with the same condition is being prescribed this drug by a neighbouring health board."