Thanks for taking the time to visit my JustGiving page. However the story is not about me, it's about a little boy called Ruban. Please take the time below to read it and donate what you can to really change someones life. 

I'm running a 10k in August (a small gesture) but am hoping to raise as much money as I can for a 'little legend' on his journey to raise £80k in helping him to walk.

For full updates on Ruban, follow his facebook page: on https://www.facebook.com/RubansWishToWalk?fref=ts 

RUBAN'S STORY.

My name is Ruban aka ‘The Legend’ from Sidcup in Kent. When I was in my Mummy’s tummy everything was going ok. Mummy, Daddy, Nanny and my big brother Mason would often talk to me and rub Mummy’s tummy and tell me all about how life will be when I arrive. None of the scans picked up on any of my ‘quirks’.

I made my entrance 3 weeks early on the 8th of June and changed everyone’s lives forever. My family would tell me I was perfect, and the only thing that was picked up was that my eyes weren’t quite right. Nobody knew if I could see anything because I had clouding over my corneas. Mummy, Daddy and Nanny knew from then that my life story would be different to the one they told me about inside Mummy’s tummy.

But, they knew that even though it may be a different story, it would be just as amazing when on that very first day I was born I gave them a very big smile. At 8 months of age I was admitted into hospital for 6 nights with a severe case of Bronchiolitis and a chest infection. My Mummy and Daddy believe that this was due to my undiagnosed Dysphagia, which was causing me to choke on my fluids. I had a feeding tube, due to dehydration and was on oxygen. I was very close to being put into induced sleep for aided breathing.

But like everything else I surprised the doctors by fighting it and smiling as soon as I had the strength. After many hospital visits, Mummy and Daddy made the difficult decision to have the lens in my left eye removed at 9 months of age, to remove cataracts and dead blood vessels attached to my lens. The hope was to clear the way for light into my eye and improve my vision. Unfortunately this operation was unsuccessful, as the lens could not be reattached, due to the size and shape of my eye and the damage to the lens by the clouding.

That means I am partially sighted. I can make out light and dark in my left eye, but not shapes and objects. I also have something called Nystagmus in both eyes, which means my eyes shake uncontrollably. My Daddy says his eyes do the same when he has a drink, but he won’t let me try any.

From a very young age I learned how to find the ‘Null Point’, where I could stabilise my good eye to get better vision, but this also means that I get pain in my neck after a while, due to my unusual head position.

I showed my Mummy, Daddy and Nanny just how special and unique was I when I wasn’t reaching any milestones. I tried to sit up, but no matter how much mummy and daddy helped me I just couldn’t do it. My body wasn’t doing what my mind was telling it to do. Mummy and Daddy knew I had spasticity in my legs and inwards pointing feet but the professionals kept telling Mummy and Daddy that I was just still very tight and to just massage my feet.

However, nothing helped and finally I got to meet my physiotherapist who said that I have something called high muscle tone.  Since then I’ve brightened the lives of many other professionals including my neurologist who has just given me an MRI scan under general anaesthetic. We are all waiting on the results to find out what is happening in my little brain. I have also had blood samples taken for genetics testing.

My Mummy and Daddy have set up a Facebook page, a website and this JustGiving page to raise awareness and monies for Tree of Hope, to enable me to have SDR (Selective Dorsal Rhizotomy). This is an invasive surgical procedure which will remove the spasticity in my legs but not my arms, which I have to a lesser degree.

The procedure has a 100% success rate, but requires months of intensive physiotherapy afterwards, due to the muscles being completely the opposite of their original tensed state (known as high muscle tone). This surgery will enable me to walk, reduce the pain, uncomfort and tiredness associated with constant high muscle tone. It will also prevent the need for numerous very painful operations on my hips and legs in the future.

With the extensive and intensive physiotherapy, I will learn to walk from scratch. My legs will not be the same as other children, but I will eventually be able to walk, play and maybe even run and jump with other children, hopefully without the aid of a walking frame.

Should we exceed the target amount, or if we do not raise enough funds, or if they cannot be used for any other reason, the funds raised will go to the general funds of Tree Of Hope to assist other sick children.

My Mummy and Daddy are fully committed to giving me this opportunity to lead a life like any other child – and a successful and pain-free future as an adult.

Thank you from my Mummy (Becki), Daddy (Darren), big brother aged 7 (Mason), Nanny (Karen) and of course the ‘Legend’ myself, Ruban xxx