Ruban's Wish To Walk - SDR
Thanks for taking the time to visit my JustGiving page.
My name is Ruban aka 'The Legend'. I am five years old.
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.
This procedure left me with Glaucoma (high pressure in my eye) and means I must have daily eye drops of I could lose my eye.
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 also suffer from Photophobia, which means my eyes are very sensitive to sunlight and bright indoor lights.
I showed my Mummy, Daddy and Nanny just how special and unique was 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. But 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 given me an MRI scan under general anaesthetic.
This scan revealed two different brain conditions.
The first one is something called ACC (Agenesis of the Corpus Collosum). It means that the part of my brain that connects the two hemispheres together is slightly missing. Mummy and Daddy believe that this is the cause of many of my symptoms, especially my balance.
The second one is Chiari-1 Malformation. This is where the bottom of my brain is sinking into my spinal canal. This means that I get I tense pressure headaches when I laugh, cry, cough or play for a while.
I recently had Fornum Magnum Brain Decompression surgery, where I was put to sleep and a team of Neurosurgeons spent three and a half hours taking my headaches away.
They opened my skull, chipped some bone away from the inside. They removed the top vertebrae from my neck, then scored the Dura (protective layer of my brain). This is all to make room for my brain and reduce pressure.
I surprised everyone with my fast recovery and so far, I have had no headaches.
I have also had blood samples taken for genetics testing. My DNA is being tested in something called the 100 Genomes Project. This is a huge science project involving cutting edge technology and us the first of it's kind. I may be able to help other children in the future.
My Mummy and Daddy originally set up a Facebook page (Ruban's Wish To Walk - SDR), a Twitter account (@RubanTheLegend) and most importantly this JustGiving page to raise awareness and for funding, to enable me to have SDR (Selective Dorsal Rhizotomy) and vital physiotherapy and aftercare in the months after.
However, the SDR procedure (but not the physiotherapy and aftercare) is now available on the NHS. So the total needed is now much lower.
I cannot have the SDR surgery without proof that we have the means for the physiotherapy and aftercare. So my cause is to raise money for this.
SDR 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 then being completely the opposite of their original tensed state (high muscle tone).
This surgery and the physiotherapy and aftercare following it will enable me to walk, reduce the pain, discomfort and tiredness associated with constant high muscle tone.
It will also prevent further complications and therefore 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 never be the same as other children's, 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.
Here is a list of the 'Quirks' that make me 'The Legend':
Peters Anomaly A.S.D.A. (which is my diagnosed eye condition).
ACC - Agenesis of the Corpus Collosum (the white matter of my brain, in the centre of the left and right hemispheres did not form properly).
Chiari-1 Malformation (the back of my brain goes beyond the base of my skull, where it should not - this can cause extreme headaches and irreversible stiffness of the arms, requiring Brain Decompression Surgery (which I have recently had done).
Four-Limb Motor Disorder, equivalent to Cerebral Palsy GMFCS Level 4.
Photophobia (my eyes are very sensitive to sunlight and bright light).
Nystagmus (my eyes shake uncontrollably - from a very young age I learned how to find the 'Null Point', where I could stabilise my good eye to get better vision).
Ocular CHP (compensatory head posture - I have to hold my head in a certain position to be able to see properly with my good eye).
Glaucoma (I have pressure problems in my left eye which I need daily drops for, otherwise I could lose the eye).
Elliptical pupil (the pupil in my right eye (the good one) is shaped like a cats eye. You have to get close to see it though!). The pupil in my left eye is fully dilated and stays that way all the time.
Dysphagia IDDSI Level 3 (I choke on liquids, so need to have special thickener powder added to my water bottle. I cannot eat mixed consistency food, like my favourite fruit - strawberries.
I am under review for a stomach peg, so that I can have liquid sent straight to my stomach, bypassing my throat and windpipe.
Sialorrhea (hyperactive saliva glands, due to poor muscle control). This further puts me at risk of choking. I have had Botox injections in my saliva glands, but they were unsuccessful.
Global Development Delay (this is where I learn everything a little bit slower than other children).
Motor Dysfunction (this is where my muscles do not function the way they should).
Axial Hypotonia (this is my lack of stability and balance in my trunk area).
Dystonia (the increased muscle tone in my hips, legs and feet - and to a lesser degree in my shoulders).
Chronic Consipation (due to my increased muscle tone, I have to drink 'Movicol' every day. If I miss any, I have very traumatic and painful number twos).
Due to the SDR surgery having a 100% success rate, 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.
The optimum age for this surgery is four years. However, I have to have another surgical procedure first.
This is Soft Tissue Release (my hip adductors and hamstrings must be cut, to release tightness and enable my hips to open more, meaning I can straddle toys and use a potty without pain and discomfort. I may also stand (aided) for a longer period of time with less pain. This also may help to prevent my hips from dislocating.
Mummy and Daddy want to raise the money I need, by the end of 2019.
Please visit my Facebook page 'Ruban's Wish To Walk' regularly and follow me on Twitter @RubanTheLegend, to find out more information about the surgery and everything related to the fundraising. Please do not feel expected to donate. Spreading the word for me and increasing the reach of this cause is just as important. Thank you from my Mummy (Becki), Daddy (Darren), big brother aged 10 (Mason), Nanny (Karen) and of course the 'Legend' myself, Ruban xxx
Now over to Mummy and Daddy:
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.
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