A teenager who suffers from a rare degenerative muscle disease struggles to cough or even swallow his food because his body has become so weak.
Jake Ogborne’s was diagnosed with Spinal Muscular Atrophy at the age of four and since then has had a life of hospital appointments and therapy.
But over the past year the 17-year-old’s condition has rapidly deteriorated. He can no longer walk and finds it hard to eat meal.
Mum Kate, from Brislington, says she’s now at the ‘point of desperation’ and has launched a major fundraiser to raise half a million pounds to pay for life-changing treatment.
Results from the new drug have been very positive with many being able to walk again.
SPINRAZA has to be injected into the patient’s spine six times in the first year, three times in the second and thereafter it will depend on outcome as currently there is not enough data to reliably predict what each patient will need going forward. This equates to, a staggering, £450,000 in the first year alone and then hundreds of thousands of pounds potentially moving forward.
Kate said: “SMA is a very cruel, degenerative neuro-musuclar disease which affects every muscle in his body. Up until last summer Jake was still able to walk short distances, then bang – the disease got hold of him which took him off his feet.
“We have to lift him into his bed, help him to sit up and more recently he has found it harder to swallow food and even cough as SMA affects all muscles in the body.”