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


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, , ,

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