Jake was diagnosed with Spinal Muscular Atrophy type 3 at the age of 4. SMA is a genetic, degenerative neuro-muscular disease which has been passed to Jake from myself and Dave. Obviously we did not know we were both carriers of this defective gene so it was devastating when Jake was diagnosed as the guilt we felt was unbearable. We still live with this on a daily basis but we try to stay strong as his condition worsens.

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 six 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 his manual wheelchair. He REFUSES to go into an electric wheelchair as this, he thinks, will make him look" too disabled".

We have done our research and the wheels that we need for his K-series wheelchair are battery powered which will help him to get around without too much strain on his upper arms, so conserving his precious energy for the things he likes to do.

One of my incredible friends has already raised a lot of money towards his wheels by doing a gruellng four day cycle ride across the Alps. (A HUGE thank you Julian Cook, you truly are a very generous man).

There is a newly released treatment out there for SMA sufferers called SPINRAZA. This is currently NOT available to Jake because the NHS can't afford it!! This has been devastating news for all of us as we watch him weaken so any financial help towards his wheels or setting us on the road to paying for SPINRAZA ourselves (along with donations) would be INCREDIBLE.

I know so many of our friends have asked about donating to help Boo so here is your chance ! THANK YOU SOOO MUCH xxx

LAST THING: We are having a "Boo's Wheels" fundraiser on FRIDAY 10TH NOVEMBER at The Thunderbolt, Bath Road in Bristol where Dave will be headlining with his band, THE BLUE BUS and my gorgeous friend Tegan will be supporting with her band FURLINED. We will also have some amazing teenage performers. It;ll be a fun night so please do come along and support Boo. Tickets are £10.00 and if you click on the 'donate' button and leave a message along with your email address, I will email through your ticket. THANK YOU THANK YOU THANK YOU THANK YOU XXX

We're also after RAFFLE PRIZES so please get in touch if you'd like to donate a prize... Again, THANK YOU xxx

Thank you for reading and helping xxx