After a couple of years off ...(I let Mum do the fundraising last year with her abseil).....I'M BACK and it's time to Ramble again!!!

Many of you probably already know all about me and why we're fundraising for Rainbow Hub, but for those of you who don't... a quick summary of my life :

When I was born, I wasn't breathing and so I had HIE (Hypoxic Ischaemic Encephalopathy, or oxygen starvation to you and me) which caused quadriplegic mixed cerebral palsy (Grade 5 which is the worst), epilepsy, dystonia, scoliosis, learning difficulties and I have to be fed through a tube straight into my stomach. The doctors warned Mum & Dad that it would be very unlikely that I’d ever talk, eat, sit or walk and that there was no cure.

I’ve also had 3 lots of emergency surgery on my bowels because I have rare Intestinal Malrotation with recurring adhesions – very scary and they make me very poorly. I’ve also had my hips reconstructed, I’ve had one hand operated on to help it work a bit better (and waiting for surgery on the other for dislocated knuckles!) and at some time I’ll need to get my dislocated elbow fixed. I’ve now also added severe scoliosis to my list but thankfully I won’t be having surgery on that as it would be too risky! I've lost count of how much surgery I've had ... I don't do things by halves lol!!!

My bowels are still causing problems which has meant several hospital visits/stays over the last couple of years but we're working on trying to fix that and I won't let it beat me!

But, all this doesn’t stop me from wanting to do what my friends do and being a normal 19 year old.

Through all of this, the amazing Rainbow Hub has been there to help and support me, Mum and Dad.

We found Rainbow Hub and a therapy called Conductive Education when I was 2.

Since then, I’ve achieved so much more than I was supposed to. With their help, I’ve learnt to drink and eat a little; to hold my head up (you wouldn’t believe just how heavy your head is when working against gravity!); to sit briefly on my own; and to take a few steps with help (which I love doing!) – things everyone takes for granted but are so hard when your body & muscles won’t do as they’re told. I’m also doing really well at learning to communicate even though I can’t say many words, yet!

Over the last 19 years, I have continued to surprise my Mum & Dad, Doctors and my physios by what I have achieved …. Things I wasn’t supposed to have been able to do with my severe cerebral palsy & various medical ‘issues’!

To add to learning to pedal my trike on my own (which totally amazed my neurologist Dr!) and surfing, I absolutely love skiing and am getting really good at it..in fact I'm now a World Record Holder as part of a sit-ski team! I love being as active as I can and hate sitting around!

I also love music and strumming on my guitar. Mum & Dad are great at helping me, but I would love to be able to do more things for myself, just like my friends can, especially now I'm a teenager.

Thank you for taking the time to read my story....

Please dig deep and support us so that I can continue my hard work – my life would not be the same without Rainbow Hub

Your Gift really will last me and my friends a lifetime

Thank you,

Alex (with Mum's help)

No other organisation offers such a diverse range of services aimed at improving the physical, social and emotional well-being of children with complex needs, as well as reducing the stress and isolation in their families. In a complete contrast to NHS services, our charity offers a picturesque country escape with a unique family first approach. Backed by a robust fundraising strategy, strong board of trustees and clear vision to brighten the lives of disabled children.