Steven's story - Fabry Awareness Month

This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease. This week, we have Steven Gill, whose father had Fabry and sadly passed away last year.


Information contained in these articles has been collected and written by our guest blogger and does not necessarily reflect the opinions of the MPS Society or its Board of Trustees.


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.


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.


The 59 events:

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.


More information:

If you would like to know more about Fabry disease, please head to our dedicated Fabry page.


If you would like to participate in one of Steven’s #59events, please contact our Fundraising team by calling 0345 389 9901 or emailing fundraising@mpssociety.org.uk.