STRENGTH IN NUMBERS

Strength in Numbers dedicated to my late mother Kay

Heartbroken Sam, 6, could lose the drug that gave him his childhood back

LITTLE Sam Brown loves nothing more than playing with his younger brother and dreams of becoming a fireman.

Yet six-year-old Sam has a rare illness that means he will never physically grow up and it threatens to rob him of his future.

A pioneering drug has been helping to keep him mobile for the past three-and-a-half years and offers the only hope of prolonging his life. Yet his parents must wait until the end of this month to learn if the NHS will take over the £395,000-a-year funding of his treatment, which until now has been provided free of charge by a drug company as part of a trial.

His mother Katy, 38, said: “This drug has given him the freedom to be a child again. “It feels like a ticking time bomb. If he doesn’t have that drug, the clock will start ticking and the degenerative impact can start to happen. “Once the damage is done no amount of this drug at a later date is going to turn back the clock. “There is no other viable option. We could raise a few hundred thousand pounds as a one-off but to do it year in year out for the rest of his life is not feasible. Not allowing him access to a proven treatment discriminates against people with rare illnesses. I will never stop fighting for him until he gets what he deserves.”

Click on the link to read more

http://www.express.co.uk/news/uk/584296/Sam-Brown-treatment-NHS-illness-Vimizim

Sam-584296

Little Sam has become much better after receiving the special treatment

Filed under: NHS, , ,

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