North East SMA families call for more to be done by the Government
2 Tyneside dads are calling on the government to do something to help their sons – who are battling a life limiting condition.
2 Tyneside dads are calling on the government to do something to help their sons – who are battling a life limiting condition.
6 months ago we brought you the story of Ollie Crawshaw and Sam McKie, 2 young boys from the North East suffering from Spinal Muscular Atrophy.
Though they have different levels of the degenerative muscle condition, both boys are unable to walk or feed themselves, with Sam even needing to be turned over in bed as he can’t do it himself.
Their families were hopeful that a new drug would give the boys a new lease of life, and help reverse the effects of SMA.
However, 6 months on and STILL nothing has been done by the government to refer the drug for testing, and now families are having to look into travelling abroad to get help, as the drug has been approved in several European countries, as well as America, Canada and Brazil.
But, as Rob, Ollie’s dad explains – this can be expensive and tricky;
“It’s travelling for our children, it’s time out of school, it’s the cost implications if you have to go half a dozen times a year to another country,
“It’s probably going to be about a thousand pounds each time you go which won’t be funded by the UK.”
He goes on to tell us how frustrating it is to see his son’s condition deteriorate while the family is forced to wait for the government;
“We can talk about our children and their decline and the lack of time that we have, but that is pretty much down to the lack of progress in this country, and that falls pretty much on the shoulders of Mr Hunt and the government and costs.”
Gary McKie, Sam’s dad, is part of the TreatSMA campaign – who are fighting for the government to push the drugs which could treat SMA forward to NICE for testing.
They’ve released a video which they hope tells the story and shows there can be hope for sufferers.
Drug trials and referrals can take a long time, so it’s unlikely an SMA treatment would be available on the NHS for at least 2 years.
He tells us action needs to happen – soon;
“Our children don’t have that time, they are depreciating all the time and losing abilities,
“Just sitting, waiting on the UK government and NICE and NHS England – it’s not going to land on people’s laps unfortunately.”
You can find out more about the TreatSMA campaign through their websiteA Tyneside dad is calling on the government to do something to help his son – who is battling a life limiting condition.
6 months ago we brought you the story of Ollie Crawshaw and Sam McKie, 2 young boys from the North East suffering from Spinal Muscular Atrophy.
Though they have different levels of the degenerative muscle condition, both boys are unable to walk or feed themselves, with Sam even needing to be turned over in bed as he can’t do it himself.
Their families were hopeful that a new drug would give the boys a new lease of life, and help reverse the effects of SMA.
However, 6 months on and STILL nothing has been done by the government to refer the drug for testing, and now families are having to look into travelling abroad to get help, as the drug has been approved in several European countries, as well as America, Canada and Brazil.
But, as Rob, Ollie’s dad explains – this can be expensive and tricky;
“It’s travelling for our children, it’s time out of school, it’s the cost implications if you have to go half a dozen times a year to another country,
“It’s probably going to be about a thousand pounds each time you go which won’t be funded by the UK.”
He goes on to tell us how frustrating it is to see his son’s condition deteriorate while the family is forced to wait for the government;
“We can talk about our children and their decline and the lack of time that we have, but that is pretty much down to the lack of progress in this country, and that falls pretty much on the shoulders of Mr Hunt and the government and costs.”
Gary McKie, Sam’s dad, is part of the TreatSMA campaign – who are fighting for the government to push the drugs which could treat SMA forward to NICE for testing.
They’ve released a video which they hope tells the story and shows there can be hope for sufferers.
Drug trials and referrals can take a long time, so it’s unlikely an SMA treatment would be available on the NHS for at least 2 years.
He tells us action needs to happen – soon;
“Our children don’t have that time, they are depreciating all the time and losing abilities,
“Just sitting, waiting on the UK government and NICE and NHS England – it’s not going to land on people’s laps unfortunately.”
You can find out more about the TreatSMA campaign through their website