STRENGTH IN NUMBERS

Strength in Numbers dedicated to my late mother Kay

Father faces commuting from FRANCE every day because his sick sons need a drug to help them walk that’s not available on the NHS

  • William Baker, six, and brother Isaac, three have muscle-wasting disease
  • Duchenne muscular dystrophy will leave them both in wheelchairs
  • Family want pioneering drug, Translarna, which is available in France
  • Decision on whether it will be made available on NHS expected in February
  • Father Robert  is prepared to make 285-mile journey from London to Paris  

A desperate father whose sons both have a rare muscle-wasting disease faces relocating his family to France for treatment if a new drug is not offered on the NHS. Rob Baker, of Colchester, Essex, said he will make the 285-mile cross-country commute so his sons William, six, and Isaac, three, can get a pioneering drug for Duchenne muscular dystrophy (DMD). The disease, which causes muscles to deteriorate and leads to early death, typically sees sufferers confined to a wheelchair by the age of 11.  And while the first treatment to protect boys from the worst ravages of the disease is now available in several European countries including France, Italy and Spain, Translarna is yet to get the go-ahead in the UK.

Mr Baker, 40, said the family face a race against time for one of their children, as the treatment is only effective in patients who are still walking. He and his wife Clare, a neo-natal nurse, are considering moving to France where the drug is available on prescription if the decision in England expected early next year, does not go in their favour. There, he will have to commute back to London every day or be forced to spend nights in London away from his family, to carry out his job as a tax advisor. 

Click on the link to read more

http://www.dailymail.co.uk/health/article-3344104/Father-faces-commuting-FRANCE-sick-sons-need-drug-help-walk-s-not-available-NHS.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490

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William and Isaac Baker, pictured with mother Claire at Disneyland Paris, struggle to walk because they both have the muscle-wasting disease r Duchenne muscular dystrophy

Filed under: Disabilities, NHS, , ,

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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