When my youngest, Hailey, was diagnosed with a rare disease I felt completely lost. I was striving for things that I didn’t need, but it was evident I was looking for a coping mechanism for the pain and hopelessness I felt for my daughter. When things were incredibly hard, I started walking with her in a stroller – and found that not only was it something I enjoyed, but it was an incredible outlet for me. More than that, Hailey loved it so it become something we could do together. Soon we were running every day and it wasn’t long before I had registered to be an ACTIVist – creating awareness one km at a time.
God had really intervened in my life in a huge way and I truly feel that this is my purpose in life – to create awareness, raise as much money as I possibly can, fight the good fight, love unconditionally, teach my children and others the importance of having a “why” in life as well as supporting the rare disease community. ”
Our journey started when we lost our youngest daughter to a combination of rare diseases in 2014. Knowing that we not only wanted to create more awareness for rare diseases but also keep the memory of our gorgeous Sadie alive in the process, we decided to use our mobility to spread the word and make a difference. And given that swimming had been a firm favourite in the family and having seen some of the rare disease initiatives that were raising funds, the idea for #Swim4Sadie was born.
Midmar miles are now an annual family event. We also have had the opportunity to take part in two lengthy swims with Madswimmer – dedicated purely to #Swim4Sadie. Both of these events gave us the platform to get some endurance swimmers involved in what we do – spreading the word further – and we hope to expand on this further. Apart from swimming, the family is also slowly getting into running and while we may not cycle any longer, we also host one of the dedicated Rare ACTIVist water points for the 947 Cycle Challenge on route to really help give our cyclists a little extra motivation and sustenance they need to get through the race. Every day we use our mobility and keep the memory of Sadie alive!
At the age of 6 a virus called Guillain Barre Syndrome completely paralysed me and I had to be attached to a ventilator. I was told that "I would never walk again", and that my "body and brain may not be fully functional" but I defied the odds. I never gave up and was determined to show those people who didn’t believe in me that I was capable of so much more, so I started participating in sports. However, in 2015 while competing at high-competitive level triathlons, I suffered a setback – struggling to walk let alone run. It was then that I was diagnosed with Pompe Disease.
In a miraculous sequence of events I heard about ‘Pedalling4Pompe’ and was put in touch with Rare Diseases SA. They saved me! They not only helped me to navigate the disease and get further testing, but also assisting me to get approval for Enzyme Replacement Therapy which has completely changed my life. It was then I knew that I wanted to create even more awareness about the many rare diseases out there. I found a new drive and love for cycling and pushed myself even more from the Cape Epic to the world’s toughest bike race, the Munga, despite the cautions not to. Everything that people said I couldn’t do – I worked so hard to prove them wrong and I did it. Life is not about how many days you have to live on this earth but it’s more about what you fit into those days that allows you to live a remarkable life. I challenge you every single day to get out of bed and do something that your future self will be proud of.
There are moments in life that change and shape you. They put you on a journey you never expected. Meeting Layla was that spark for me. I had just started my running journey after a health ‘wake-up call’ and seeing her fighting spirit, her love for others and sheer determination to not allow her disease (Ependymona) to control her was the catalyst I needed to expand the goals I had originally set and start one huge journey, racing for charity.
And then came Rare Diseases. I’d see them at races supporting riders, but it was only at a ‘Snowflake Ball’ where I met Megan that I was exposed to the amazing work they were doing – caring and advocating for people with serious health issues who don’t have all the means to fight. I am in the fortunate position that I am fit, healthy and have a passion for running, swimming and cycling and the RARE activists have touched on all of these. What’s more, I have met some great people through the Swim4Sadie, Run4Rare and Ride4Rare initiatives and proud to share my journey for a cause. After all, I do the easy part of running – they do the hard part of keeping the fight going!
I started running in 2018 and after 6 years of no exercise, it really was a struggle to get going. I realised however, I wasn’t alone – there are many moms and dads out there that are in the same position and just need some motivation to get out there and live a healthier lifestyle. For me it was also personal. Having a husband with a rare disease – Common Variable Immune Deficiency (CVID) – and witnessing his health deteriorate to a point where he couldn’t participate in any sport – was devastating, especially considering he was an avid sportsman.
I started running to motivate others and was selected as the Face of the Spar Women’s Race – Joburg 2019 – which really allowed me to take this motivation and awareness forward.
To me, being a Rare ACTIVist means that when I run, I run to support those who can’t and may never be able to take part in sport. I run for the families, parents and siblings of people that live with rare diseases. I run to have their stories heard and to know that they are not alone. I’m a #rareactivist and I #run4rare!
Like most parents with a child with a rare disease, life has never been easy. My son, Brendan, suffers from a rare and potentially terminal illness called Moyamoya Disease, an illness in which the arteries in his brain are constricted, starving Brendan’s brain of oxygen, triggering strokes and seizures. He had his first major stroke a week before his 4th birthday and then bilateral revascularisation brain surgery, in an attempt to prevent further strokes and deterioration. Today, Brendan walks with a pronounced limp, he falls regularly, his speech is badly slurred and he has limited functioning of his right arm, BUT each day with him is an absolute gift and our moments together are deeply cherished.
I started running for Rare Diseases SA three years ago primarily to honour the courage of Brendan, and other children living with rare and terminal illnesses. I also wanted to raise awareness of rare illnesses, as well as funds that are desperately needed to help give these extraordinary kids a chance to have the best possible quality of life, and access to appropriate healthcare and resources. Follow the death of Brendan’s mom, I continue to run to also bring awareness to the need to consider the caregivers and the struggles they face while caring for their rare kids. Recently I have also started competing in biathlons. In the pool I am a deafblind person, with limited sight as well as being profoundly deaf, but I continue to be inspired by Brendan and Swim4Sadie, and hope to one day complete a swim mile, becoming the first Deafblind person to do so, while raising awareness and support for rare kids and their families and Rare Diseases SA.