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Family set on UK move to help Finley

Clive and Kirstie Hesketh with Finley and 10-year old Alyssa

No Island funding for rare disease drug

The parents of a seven year old boy with a rare disease are preparing to leave the Island for the UK, so their son can receive what's thought to be the only drug which can help him.

Finley Hesketh from Onchan was diagnosed with Duchenne Muscular Dystrophy two years ago - an incurable condition which sees muscles gradually weaken.

A new but costly drug Translarna has been prescribed by specialists at Alder Hey hospital in Liverpool - but the medication, with a six figure price tag per patient per year, is not funded in the Isle of Man.

The health department says there isn't sufficient evidence to justify the cost - although Finley is among only 50 boys in the UK who could benefit from it.

The Heskeths say in the UK, they would also be entitled to non means-tested disability grants for adaptations to their home, which are not available here.

A charity Finley's Tracks was formed to help the family meet costs, and support their campaign for Translarna.

However, fund-raising will not cover the cost of the drug year-on-year - and after an 18-month battle with the authorities, Kirstie says they've reached the end of the line:   

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