April Fundraiser of the Month - Steven Gill

For our 40th anniversary this year, we have decided to have a 'Fundraiser of the Month' throughout the year. This month, we have Steven Gill. Steven shares his connection to Fabry and why he's chosen to take on a huge fundraising challenge below.


"My father, Andrew Gill, was 56 when he passed away. He died due to having Fabry disease, which ended with a cardiac arrest at his home in Leeds.


Dad's diagnosis:

Throughout his life, Dad experienced many symptoms of the disease, but owing to the varying and sporadic nature of the symptoms, he wasn’t diagnosed until later in his adult life, a week before my wedding in 2013, aged 48. It is always easier to join up the dots once the equation has been solved, but I suspect Dad, deep down, knew something was wrong. However, as a rugby-playing northerner, it wasn’t in his nature to say so.

Dad had all the symptoms of Fabry listed on the MPS Society website: tinnitus (which he put down to working in a loud factory); ‘inexplicable’ sores which he got when barbequing (his favourite way of hosting family and friends); numbness in his hands and feet; bloating; gastrointestinal problems; corneal opacity and excessive fatigue. Over time, his symptoms worsened, resulting in kidney and heart problems.


Dad received some treatments for his condition. He had a multitude of tablets, which mum constantly replenished, running back and forth from the doctors. Due to his enlarged heart, he had two separate stents put in and was fitted with a pacemaker.


We thought we lost dad a couple of times before. He would have terrible coughing fits, causing him to lose consciousness and, sometimes, they caused his heart to stop working. This happened once whilst holidaying in Mexico in the middle of the beach.


Feeling inspired:

My dad lived for his family, and he wanted to see us all happy. I have decided to embark on fundraising because I have seen how debilitating this disease is. I am lucky not to have the disease; others are less so. Therefore, I want to help individuals get the best medical support they can, which can help to improve the quality of and prolong their lives. This is why I have chosen to undertake #59events.

The inspiration behind the #59 events relates to the life expectancy for men with Fabry (this information was relayed via a doctor to my dad at the time of his diagnosis). I also wanted to undertake something that was challenging – and with four children under the age of six, including new twins - it is certainly challenging! Moreover, due to the rarity of Fabry and MPS, the MPS Society is perhaps lesser known than some other charities, so I feel that by undertaking events that will span a decent length of time, we can help to raise its profile.


The fundraising is offering a pathway through grief, too. I used to play rugby in my childhood and Dad would always be an avid supporter, bellowing instructions and words of encouragement from the touchline. When I run or cycle, I feel connected to him. I replay the memories of us together in my head: the car journey conversations back from rugby, the nod of approval he would - sometimes - give, and I feel that he is there with me. I also remember to run or cycle a bit faster – Dad was sometimes hard to please, but I am thankful it was that way. It made me the gritty person I am today.


The 59 events:

The 59 events are starting to gather momentum. It started with me doing a 169km solitary cycle in the Southwest and I have followed this up with a Santa Dash and a muddy half-marathon. But, I was never going to be able to do 59 events alone, so I turned to my daughter and my nieces, gently coaxing them into doing a junior park run, and getting them to fundraise at their schools.

After, I appealed to my good friends, Joe Thorpe and James Pender, both of whom shared so many memories with my dad. They were part of our family growing up. Dad loved their company. Joe ran 100km in January and James rode 300km in February, both having made impressive comebacks after a lengthy hiatus from exercise.


Work colleagues have also shown their support. Joe Froud helped me to fundraise for the half marathon; in March, my headteacher kindly ran the Western Super Half after my Bath Half was postponed. Also, I'm currently organising a rugby club cycle, launching from Castleford Rugby Union FC – the club where dad played for many years. We are aiming to do at least one event per month.


If you would like to take part in a fundraising event for the #59 events, I would love to hear from you. The events could be anything – cake sales, sponsored reads, car boot sales, functions, whatever you like - they are not restricted to sporting events.


The kindness and generosity people have shown since starting fundraising have been amazing. Every donation and every word makes such a difference – and, even more importantly, the money raised will also be making a difference to others’ lives, too!