'Every Day Matters' - Parents Battle for Drug to Help Son with Severe Muscle Disease

'Every day matters' - Parents battle for drug to help son with severe muscle disease

A Horsham family is battling to get hold of a drug that will slow the progress of their son's muscular dystrophy.

Mum of boys losing ability to walk face 'nightmare' battle for free NHS drug - The Mirror

Givinostat can slow the progression of Duchenne muscular dystrophy and is being offered for free by a drug firm while it goes through the process of NHS approval

Tractor run raises record amount to support boy with rare genetic condition

A tractor run in Keld, Swaledale has raised £5,500 for Duchenne UK, supporting research into Duchenne muscular dystrophy.

Parents whose sons are losing ability to walk face nightmare battle with NHS - Banbury FM

Parents whose sons are losing the ability to walk have described the “nightmare” battle they face with the NHS to access a free drug. The medicine givinostat can slow progress of Duchenne muscular dystrophy – keeping children on their feet for longer – and is being offered for free by a drug firm while it goes through the process of NHS approval. However, only some NHS trusts across the UK, and few in England, are giving the drug despite it bein…

Parents whose sons are losing ability to walk face ‘nightmare’ battle with NHS - Rother Radio

Parents whose sons are losing the ability to walk have described the “nightmare” battle they face with the NHS to access a free drug. The medicine givinostat can slow progress of Duchenne muscular dystrophy – keeping children on their feet for longer – and is being offered for free by a drug firm while it goes through the process of NHS approval. However, only some NHS trusts across the UK, and few in England, are giving the drug despite it bein…

Mum of boys losing ability to walk face 'nightmare' battle for free NHS drug

Givinostat can slow the progression of Duchenne muscular dystrophy and is being offered for free by a drug firm while it goes through the process of NHS approval Parents are locked in a “nightmare” struggle with the NHS to secure a vital drug that could help their sons walk for longer, as they face a “cruel” postcode lottery for treatment. Twins, Jasper and Arabella, both aged 10, are battling Duchenne, with Jasper severely affected as the disor…