Firstly, thank you so much for clicking on Jake's page. We need this to go viral ! Just £2.00 each from 250,000 people will get him his first years treatment which could possibly get him walking again. £2.00 is the price of an espresso coffee or less than half a glass of PINOT GRIGIO in my world !! Please ask all your friends, family and colleagues if they'd like to help..... thank you xx

Jake's story -

Jake was diagnosed with SPINAL MUSCULAR ATROPHY at the age of 4 after returning from our home in a small village in Spain called Manilva on the Costa del Sol.. SMA is a very cruel, degenerative neuro-musuclar disease which affects every muscle in his body. Up until summer 2017, Jake was still able to walk short distances, then BANG ! The disease got hold of him which took him off his feet .

History - Since the age of 4 he has had a life of hospital appointments, physiotherapy, hydrotherapy, orthotics, consultants, occupational therapy ... you name it, he's had the appointment! He's gone through life with a huge smile, an infectious laugh and lots of positivity BUT..... over the last twelve months his condition has deteriorated quite rapidly and he is now unable to walk unaided so uses his wheelchair full time. As his muscles weaken all over his body, his arms are finding it harder to propel himself in a manual wheelchair so he now has a specialist motor which helps propel him as he REFUSES to go into an electric wheelchair as this, he thinks, will make him look" too disabled".

Add to this the fact that 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.

The Good News

There is a now a relatively newly released treatment for SMA called SPINRAZA which has been developed in partnership with various organisations but is owned by the pharmaceutical company Biogen.

Current results of those who have been lucky enough to receive the drug are very positive to the point where at worst the disease degeneration has been halted and in some instances patients have been able to walk unaided.

The Bad News

Biogen in their wisdom (and probably due to the fact that this is the only treatment for SMA currently on the market rather than a direct relationship to their investment) have priced the drug at £125,000 per shot.

So the drug has to be injected into the patients spine four times in the first year, 3 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 £500,000 in the first year, £375,000 in the second and then hopefully a reduction moving forward.

Of course there are newer drugs (which are looking very promising) in the pipeline so these will affect prices going forward as the monopoly is broken, but these may be a few years off and as anyone with this degenerative abomination will tell you time is something sufferers do NOT have.

You can add to this that it is highly likely that the NHS (through NICE) will refuse to make this drug available on the principle of ROI which to anyone with a moral compass would find abhorrent as essentially there is a drug sitting on a shelf somewhere which can vastly improve the lives of so many SMA patients.

To make matters so much worse countries much less wealthy than the UK have embraced Spinraza and are making it available to sufferers through their own versions of the NHS … countries like Spain, Portugal, Turkey, Estonia, Slovenia, Greece, Switzerland, Hungary and many more .. how is this possible??

It begs the question why can Biogen and the NHS not sit together and work this through to find a price point which is mutually beneficial …. I always thought that anyone who would want to involve themselves in the health industry would do so as a vocation and not to exploit an individuals misfortune.

What Next

We as a family are now at the point of desperation and need help in any form to either raise funds to make the drug available to Jake OR put pressure on the NHS and Biogen to reduce the price of Spinraza to a point at which it is affordable to all.

Please Help Us - doesn't everyone deserve the right to drugs that can help improve their life ??

The way that we are asking for help is for everyone we know to kindly donate £2.00 and then ask every person you know to donate a £2.00 and then they ask every person they know... etc etc... We do not want anyone to give more than £2.00 - just please tell your friends.. Surely with the generosity of friends/family/colleagues/associates etc we can start the journey of getting TREATMENT4JAKE and this can go viral.

Thank you for reading and donating. Next step, please ask everyone you know to help and donate just £2.00. Thank you from all of us x