Plea for Duchenne drug to get NHS funding

Finley with his mother Kirstie Credit: Helen McKenna

A family on the Isle of Man are waiting to hear if NHS funding will be approved for a breakthrough drug to treat a muscle wasting disease.

7 year old Finley Hesketh has Duchenne muscular dystrophy, a life-limiting condition. Doctors say a special drug called Translarna might transform his life.

Announced three days earlier than expected, the National Institute for Health and Care Excellence (NICE) announced on Friday that they are making it available on the English NHS for a five year period.

Muscular Dystrophy UK is hopeful such an agreement can be reached for the Isle of Man, Wales and Northern Ireland, and has said the drug could change young children's lives dramatically.

Translarna is for patients with a particular type of Duchenne muscular dystrophy, which is one of the most common and severe forms of the disease. Duchenne usually affects boys in early childhood. They generally only live into their 20s or 30s. Translarna could help around 10 to 15% of those affected by Duchenne in childhood and has been shown to slow down progression of the disease.