It felt like a dream come true for one Ipswich mother when life-changing new treatment for her son’s rare and degenerative illness was approved in America.
But her joy soon turned to frustration when she learnt the price tag for the “incredible” drug would be $2 million for the first year alone.
Laura Barber, whose four-year-old son George Woodward has type 2 spinal muscular atrophy (SMA), said the cost was an “absolute joke”.
Now the family is hoping Spinraza, which is the first approved medication for SMA, will get the green light in the UK and be available on the NHS.
Miss Barber, 32 and of Lagonda Drive, said: “It’s still brilliant news, I didn’t ever think we would hear it.
“They were testing these drugs for 20 plus years before they approved it, so it’s a really massive thing.
“It will just be nice when we can finally see children here having it and getting stronger, hopefully.”
SMA is a genetic and debilitating disease that causes muscle weakness, breathing difficulties and leads to severe disability.
George, who has a three-year-old sister, Ivy, was diagnosed with the condition when he was just 21 months old, and he now relies on the use of a wheelchair.
Ever since they were hit with the news, Miss Barber and partner Lee Woodward, 33, have fundraised tirelessly to buy the equipment their little boy needs to improve his quality of life.
Miss Barber said Spinraza, which was authorised by the FDA in the United States on December 23, could potentially slow down the progression of the illness.
“Children are getting that strength back that they lost, some children are getting on their feet again, some start to take steps in walking frames,” she added.
“It’s incredible.
“Every child is different so they don’t know how it will affect each child, but the results so far are impressive.”
George would need to have the treatment, which involves an injection into the fluid surrounding the spinal cord, for the rest of his life.
The cost of Spinraza in America is $750,000 in the first year.
That is for just the medication, when including appointments, testing and other charges Miss Barber was quoted a total figure of $2m.
If the drug comes to the UK, the pricing will be determined through negotiation with the Department for Health.
Last weekend the family held a Las Vegas themed fundraiser at Trinity Park on the outskirts of Ipswich, which brought in £11,300.
Miss Barber thanked everyone who attended, and also businesses that helped cover the cost of the event.
She gave a special mention to main sponsor Rick Andrews from Orwell Insurance Services Limited, as well as Mark Richards from McDonalds, VIP Balloons, Polka Dot Chair Cover and Prop Hire and Big Fun UK.
The money, which was going to be used on George’s treatment in America, will now be spent on further adaptations to the family home and car.
To donate to the George Woodward Fund, click here
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