Board Think Again on Hayleigh’s Illness

A GLASGOW schoolgirl is the only child in the UK to be refused NHS treatment for a rare illness, it has been claimed.

The claim was made after city health chiefs decided to reconsider the plight of little Hayleigh Reynolds who suffers from a disorder brought on by an enzyme deficiency.

NHS Greater Glasgow and Clyde had refused to provide gene therapy treatment which costs more than GBP100,000 a year.

Furious parents Robert and Heather Reynolds raised a judicial review at the Court of Session last week.

The court was then told by the health board’s lawyer the previous decision not to prescribe the drug Laronidase would be reviewed.

Health chiefs launched their review yesterday with Christine Lavery, chief executive of the MPS Society, which represents patients with Hayleigh’s condition, claiming she was the only child in Britain to be refused treatment.

Ms Lavery said: “This treatment is approved by the Department of Health for treatment in England and indeed patients in Northern Ireland get this treatment and in Wales they also get this treatment on a named patient basis.

“Hayleigh is the only child in the whole of the UK with MPS1 Hurler Scheie disease who is eligible for this treatment and has been denied it.”

The girl at the centre of the “postcode lottery” battle has been off school for the last two weeks after undergoing an operation to drain fluid from her brain.

But she told how the condition affects her life, saying: “Sometimes my arms and knees get sore. I can’t brush my hair at the back because my arm won’t reach.”

Concerned dad Robert, a janitor at St Cuthbert’s RC Primary School in Barmulloch, said the drug which can halt and reverse many of the symptoms will improve the quality of life for his daughter.

He said: “Apart from prolonging her life, it will make her feel a wee bit better too, not so tired.”

Mum Heather said she and her daughter may move to England as a last resort if it was the only way to access treatment.

Glasgow health bosses will announce their decision next month.

(c) 2006 Evening Times; Glasgow (UK). Provided by ProQuest Information and Learning. All rights Reserved.