A family from Ipswich have been left devastated after a health agency failed to endorse a drug that they say could halt their son's progressive disease.
Six-year-old George Woodward has spinal muscular atrophy.
A new drug, that's been shown to improve symptoms of the condition, is available in dozens of other countries, but might not be made available here.
Spinal Muscular Atrophy or SMA is a progressive genetic condition that causes muscle deterioration resulting in problems with movement and breathing.
George's parents say he's a fighter but everyday they see how the disease is destroying his body.
A new drug called Spinraza has been revolutionising treatment of SMA. It's available and government funded in 22 countries in the EU and in Australia, Canada, Japan and the US.
But the health agency NICE, which advises the NHS on drug approval, have not recommended for it to be made available here.
The National Institute of Health and Care Excellence, who made the recommendation told us they 'would welcome further discussions about access' to the drug.
And they noted there were 'substantial benefits' but the cost 'is too high for it to be considered a cost-effective use of NHS resources'.