South Holland and the Deepings MP Sir John Hayes has taken on a family’s fight to allow a 12-year-old girl to get the medication she needs to stop her delibitating condition worsening.
Rae White, of Gedney Hill, has type two Spinal Muscular Atrophy (SMA), a condition that slowly stops her body functioning.
A new drug that’s been shown to control the condition called Spinraza is available in many foreign countries, but after initially being accepted in Britain its usage has been suspended due to its cost.
Now Rae’s family have been told she might not be eligible for the drug, her family including mum Tanya White are campaigning for the treatment to be made available.
And following The Voice’s recent article on Rae’s condition, Sir John recently took the matter to the Houses of Parliament.
“The National Institute for Health and Care Excellence approved a treatment for this condition in May,” he told The House. “Yet it now has become clear that the roll-out has been delayed and the allocation may be partial.
“Quite simply, those who suffer deserve better.”
Sir John met both Rae and Tanya as well as held a meeting with other MPs who have constituents with the condition.
Rae’s mum Tanya, said: “It does feel like we’re being listened to now.
“It’s good to get all the hope we can get.”
The White family are holding a Race and Karaoke Night at The Plough in Holbeach St Johns on Saturday, July 27 to raise funds for Rainbows Hospice for children in Loughborough where Rae is a regular attendee.
All are welcome to attend the event which starts at 4pm.
Businesses or organisations that may be able to donate auction or raffle prizes can email Tanya on [email protected]
