Petition launched to help babies in the North East with SMA
There are calls for a new drug to be made available to treat babies born with a genetic disease that stops their muscles from growing.
A Whitley Bay dad is fighting for life changing treatment that could help his six year old son.
Little Ollie Crawshaw is completely dependent on his wheelchair after he was diagnosed with Spinal Muscular Atrophy (SMA) aged two.
It’s a genetic disease which causes muscle weakness, progressive loss of movement and in its most severe form, death.
Figures show that SMA is the biggest genetic killer of babies but recent trials in the U.S seem to have huge success, with no complications or side effects in four years.
A petition has launched online calling for Nusinersen to be made available to terminally ill children with Spinal Muscular Atrophy.
Rob Crawshaw, a policeman from Whitley Bay, told us he was devastated when he heard his son Ollie’s diagnosis. He said:
“It was just before his second birthday after going for a few different tests that we found out he had this condition – SMA – which was devastating at the time because the result for our son and the level he’s got means that he can’t walk, can’t grow the muscles that he needs to stand up.
“Knowing that there’s a drug out there which has been tested over four years and has had no side effects whatsoever, some families would give anything to try that drug on their children. I think the time has come whereby even just on compassionate grounds the drug should be available for use by these families.”
You can find out more information about SMA here: and view the petition here: