On the 20th August I'm going to be a Superhero and take part in the 2022 Superhero Tri!  I'll be swimming, cycling and running to raise funds for White Lodge.  

I first went to White Lodge in 2016 which was the best thing that could have happened.

There is always so much to do. I like the art, the quizzes, the special
interest talks but most of all I like hanging out with the staff and the other members.  The banter is great and I’ve got my best friends in Michael and Jason.  We just talk about silly stuff and it just keeps me going. I look forward to it every day.  

Your donation will enable White Lodge to continue offering myself, and other children and adults with disabilities these invaluable services.

Here's my story:

As a young boy I was brought up by my Mum and Dad in Cookham, near Maidenhead, along with my older sister Tricia. It was a happy childhood and like other kids I was very active.

I really liked School, in particular Science, history and art which I still enjoy today. One of my favourite hobbies was playing football for my beloved Windsor Warriors, where I played as a defender or goalkeeper.  I just wish I could still play now.

After my Grandad died we moved to Windsor in 1993 where my younger brother Rob was born. We still live in the family home today with my Mum Sue, my Dad Rob snr and my brother. We are a very close family.

As a child I carried on living life as normal but my parents used to take to me to lots of Doctors appointments as they thought something was wrong. I had many tests but at the age of 13 my Mum and Dad were told that I had a very rare condition called Ataxia Telangiectasia* – to this day I still can’t pronounce it. That’s when I remember life changing. One day they hope to find a cure for the condition but it’s too late for me now.

*Ataxia Telangiectasia – is a rare neurological recessive disorder that effects only 1in 40,000 – 100,000 people. It affects the nervous system, immune system, and other body systems. This disorder is characterized by progressive difficulty with coordinating movements (ataxia) and mental development.

Over the years it’s affected movement in my arms, my legs and it has slowed up my speech. Eventually I lost the strength to stand up on my own two feet so I’ve become reliant on my family and carers to help with a lot of my day-to-day needs. I still have the strength to get out of bed and get into my electric wheelchair but I do now need help with toileting, showering and feeding.

Fortunately, my thumbs work perfectly well so I can still play with my PS4 to watch TV and play games like Call of Duty (Russ gives me a give smile)

My Dad is my primary carer as my Mum has got a bad back and my brother helps out a lot too.

I love playing with the PS4 and also watching the wrestling. I think it’s great! My favourite is The Undertaker and I spend hours watching his old fights.

Music wise I like Bob Marley and Little Mix – what a combination!

I’ve also really enjoy watching cricket and I’d love to go and watch a match one day.

Most of all I like being with people and making friends. I get bored really quickly so having company makes me happy.

When I was a college I had two very close friends. Graham had Ataxia Telangiectasia like me and Nick had a bad back condition which meant he had steel rods in his back. We spent a lot of time together before they moved away and became more unwell. Sadly, both Graham and Nick died in the last few years which upset me a great deal. However, I’ve now found great friends at White Lodge – especially my bestest buddies, Jason and Michael – they just make me laugh.

I used to go to the Phoenix Day Centre in Langley but when they couldn’t take me anymore my parents found White Lodge in 2016 which was the best thing that could have happened. There is always so much to do. I like the art, the quizzes, the special interest talks but most of all I like hanging out with the staff and the other members. The banter is great and I’ve got my best friends in Michael and Jason. We just talk about silly stuff and it just keeps me going. I look forward to it every day.

The White Lodge team talked me into taking part in the Super Hero Tri event at Eton Dorney Lake. I had to choose which Super Hero to be so I turned into Banana Man! I was dragged in a dinghy by a team of swimmers on the first leg, then I cycled with an able-bodied friend in an adapted tandem bike before being wheeled on the final leg towards the finish line. It was brilliant and they made me feel really special. I’ve done it twice now and hope to raise some more money for White Lodge again next year. I would not have had the opportunity if
it wasn’t for the team at White Lodge.

Life would be very boring and whilst my family are amazing I’d feel very isolated. White Lodge give me great purpose and keeps me going. I can’t thank them enough.

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