'It’s so, so cruel.'
Jake Ogborne, 18, celebrated the arrival of new drug Spinraza before finding out he wasn’t eligible
Earlier this year Jake’s family heard new ‘wonder-drug’ Spinraza would soon be available on the NHS and threw him a party to celebrate. The guidelines say recipients must have been able to walk in the last 12 months, but Kate claims it has been made available to those with Type 2 SMA, who have never been able to walk.
Jake has already deferred his place at Bath Spa University until 2020 in order to take a course of Spinraza.
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