For our 40th anniversary this year, we have decided to have a 'Fundraiser of the Month' throughout the year. This month, we have Elliot Moody whose brother Ollie has MPS. He shares his story below.
Diagnosis:
“My younger brother, Ollie, well-known within MPS circles, was diagnosed with MPS VI Maroteaux-Lamy aged four years old. With three years difference between us, being only seven at the time, I was only a young child myself and so struggle to remember around the time of his diagnosis – but I can recall the period generally – the months and years afterwards when my parents were seeking out consultants, liaising with the MPS Society, travelling around Europe visiting any conference possible – desperately seeking out what information they could on this little-known disease which had been written before them as a huge, difficult-to-spell word, on a piece of paper.
I recall the questions I would ask them at random times, as an innocent young child, about my brother’s illness – questions that must have been extremely emotional and difficult for them to answer.
We had as normal a childhood as most in all honesty – throughout our younger years and early teens, although Ollie had certain physical limitations with his height and mobility in his arms reach, for example, this didn’t stop us from playing football in the street and park at all hours until it got dark – fighting like all siblings when he would inevitably put his face in the way of the ball I had just kicked, smashing his glasses in the process. The number of trips we made to the local Specsavers must have been ridiculous!
Treatment:
In 2006, again mainly thanks to the tireless effort and research from my mum and dad – Ollie was put forward to be one of the first MPS VI patients to receive the revolutionary Enzyme Replacement Therapy. The once-weekly four-hour infusion would initially take place at Pendlebury Children’s Hospital and would be a two-hour round-trip, but one which we were more than happy to make. It was an emotional time – I remember the relief, the feeling that although this wasn’t a cure, there was something now helping him, treating him.
As the years drew on, I reached an age where I was more emotionally aware of Ollie’s struggles and limitations, daily. Even a simple thing like making a cup of tea would mean grabbing the nearest stool to step up on to grab a mug. Ollie’s general nature was just cracking on with things, not moaning, not complaining, just doing what needed to be done.
This nature would come to the fore over his teen years and into early adulthood when Ollie’s trips to the hospital for surgery became more common. From what we consider relatively minor things such as a carpal tunnel procedure on his hands to stop a ‘clicking’ motion in the fingers – to some of the most dangerous and precarious operations such as spinal decompression. One of the most worrying times in our lives came after the latter, due to a rare but known risk of the surgery, in the days post-op, there would be a fluid build-up in Ollie’s brain. Ollie had to have emergency surgery to fit a shunt into his brain which would reduce the fluid pressure. Thankfully for him, whilst a horrendous few days for us, Ollie doesn’t recall that specific time due to the nature of what was happening. Yet even though I wouldn’t be able to count the number of operations and procedures he has had over the years, I have never heard him complain about having to have any of it done.
Trying to live a normal life:
Ollie’s goal in life is to live as normally and as successfully as possible. He sees nothing as a hindrance, accepts his limitations and just finds ways to adapt. While possible, it would be difficult for Ollie to manage a generic 9-5 job, mainly due to the many hospital appointments and procedures, and so he took it upon himself in his early adulthood to study accountancy. With a keen interest in business – he set up his first e-commerce company selling mobility aids to those in need. After this, he then set up the ‘Moody Chicken’ catering business and is now spending most of his time trading stocks and shares from home.
Having had a corneal graft done on both eyes within the past 18 months to improve his eyesight, and in just the last six months – a ground-breaking procedure on his lumbar spine to hopefully improve his mobility and walking, his next goal is to learn to drive.
To me, I’m not a sibling of an MPS patient – I’m just a sibling, like anyone else, Ollie’s nature commands that, and would never allow me to feel that way. He is just my younger brother. Ollie, in the same way as probably all of those with MPS, just wants to be recognised as ‘normal’, whatever ‘normal’ is – and anyone who knows or has met Ollie, will tell you that he is just a regular 27-year-old lad who enjoys socialising with his big circle of mates, watching the football.
Fundraising:
Over the years I have taken on numerous fundraising challenges, from 10km races and The Great North Run to ultra-marathons such as the 50km Thames Path Challenge and the 80km Lakes in A Day Ultra – all to raise money for the MPS Society. The charity has been there for us as a family throughout the last 23 years of our journey, making itself available in any way it can. Be it through information, support or acting as a link service with hospitals/consultants and research groups. The role of the MPS Society is so important, as they reduce the ‘lost’ and ‘helpless’ feeling for families who have recently been diagnosed with MPS and giving constant hope on the journey ahead.
My philosophy when taking on these challenges has always been clear – that I’m lucky enough to be able to walk, be able to run as far as possible without limitation and be able to make a difference in the way some others aren’t as fortunate. However hard it may get, however painful it may feel in any of the events I take part in – is nothing in comparison to what Ollie and others with MPS must face, every single day. I can rest in the days after – some others don’t have that option. It’s for those people that these events are for – that together with all the generous donations over the years, we can help improve their situation, continue the support of the MPS Society, find and fund new treatments, and hopefully, eventually find a cure.
That’s why on 2nd October this year I’ll be running in the 26.2-mile London Marathon, and in an added twist, in honour of the charity’s 40th anniversary, I’ll be running an extra 40 miles in the week leading up to the marathon itself.
Any support, however small, is hugely appreciated and truly does go a long way.”
The pictures include Elliot running the Great North Run and Elliot, Ollie and family at the football.
At the MPS Society, we’d like to say a huge thank you to Elliot for his ongoing support!
Edited by Rhia Arden
More information:
If you would like to donate to Elliot’s London Marathon, please click here.
If you are interested in donating to the MPS Society, please click here.
