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, Rainbow Hub offers a picturesque country escape with a unique family first approach. It’s safe, friendly, free of charge to families and accessible to all. Backed by a robust fundraising strategy, strong board of trustees and clear vision to brighten the lives of disabled children.

Hi

This year I am going to take part in the Rainbow Hub Ramble Superhero Challenge by taking 20 independent steps in my race runner - 20 steps for their 20th birthday

I know this doesn't seem much, but due to lockdown & consequently no therapy or medical support along with growing too fast!, I've been struggling with painful hips and legs.  So any standing and walking is proving very difficult this year

(And I've decided to set my target at £336 as it will make my total raised for Rainbow Hub = £15000!)

Many of you probably already know all about me, but for those of you who don't... a quick summary of my life:

When I was born, I wasn't breathing with a very low heartrate and so I have HIE (Hypoxic Ischaemic Encephalopathy, or oxygen starvation to you and me) which caused quadriplegic mixed cerebral palsy (Grade 5 which is the worst), epilepsy, 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 & recurring adhesions – very scary and they make me very poorly.  I’ve also had my hips reconstructed, I’ve had one hand operated on (so far) to help it work a bit better and at some time I’ll need to get my dislocated elbow fixed 😉 I've lost count of how much surgery I've had!!!

But all this doesn’t stop me from wanting to do what my friends do and being a normal 15 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 15 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 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 my surfing, I’m learning to ski which I am getting really good at! I love being active 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 me so that I can continue my hard work – my life would not be the same without Rainbow Hub

                      Your Gift really will last me a lifetime

Thank you,

             Alex    (with the help of Mum)