Pupils back Sam, six, in his NHS drug battle as he heads to No 10

[Northerner]

A youngster with a rare life-limiting illness has been joined by fellow pupils to send a message direct to Downing Street.

Six-year-old Sam Brown, of Otley, near Leeds, is one of only 78 children in England with Morquio syndrome.

The condition prevents youngsters growing properly, forcing their organs into an ever-smaller space, leading to severe physical disability and triggering a range of other problems including hearing, sight and heart disorders.

The condition has until now been untreatable but Sam is involved in a trial in Manchester of a drug called Vimizim which has shown success in slowing its progression, giving him a better quality of life.

http://www.yorkshirepost.co.uk/news...hs-drug-battle-as-he-heads-to-no-10-1-7066197

 

[KookyCat]

Go Sam! Not that they should have to go to Downing Street of course, a drug that can improve life in such rare conditions should just be approved in my opinion. I understand the NHS needs to assess cost and benefit, but that is flawed if people are suffering in the meantime, and with rare conditions the expense is strictly limited.