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A battle with muscular dystrophy

Lindsay Sullivan is an international model and runner who has dedicated her life to raising awareness for Muscular Dystrophy. This is her story:

I first remember the term ‘Muscular Dystrophy’ when I was no bigger than a tadpole, as my Nanny would have said.

By the time I was old enough to read and write I was able to explain the complexities of this disease that my Mother was then diagnosed with, and understood all too well what it meant...that her life was to be short lived, and she could be taken from us at any time.

After being diagnosed with MD my Mom, who was then the single mother of two small children, pushed herself beyond her supposed capabilities in order to challenge this “death sentence” she had been given.

This is where my strength comes from...from the little body that over the years continued to deteriorate, and the mind within it that was determined never to give in, or give up.

My Mom is the reason behind my running, and my determination to create awareness of this disease through as many countries and cultures as possible. One step at a time.

Our family started our journey together in Ontario, Canada, eventually moving to British Columbia due to my Mom being offered a position at a college there as a professor of Psychiatric Nursing.

During these young years, my brother Ryan and I had to grow up quickly. We learned at a very young age that our Mom was going to need all the help that she could get, and that we needed to be her ‘right hand men’ so to speak.

Together with the most loving help from our maternal grandmother, “Nanny”, we tried the best that we could in order to accommodate Mom’s day-to-day struggles, learning with her as we went along.

The transitions between Mom being able to walk, to struggling to pull herself up the stairs, to using canes, to a walker, to eventually being bedridden...were all very difficult for her to handle physically and emotionally...but she carried on like the warrior that she is, to always find a way through the walls that MD put in front of her.

All along the way, Mom tried the best she could to keep her sense of humour. Laughing when Ryan and I learned how to ‘fireman’ carry her over our shoulders up the stairs that she could no longer climb. All along the way she tried her best to remain true, and let us in when she was hurting, or sad, or scared... because at the end of the day she knew that we were experiencing those things too... and instead of them being viewed as weaknesses, they became our allies within our strength. Our constant determination that we would not let it break us, gave us our solidarity.

When the time came that our Mom was no longer able to walk without the aid of a walker, our family had moved back to Harriston, Ontario, Canada, and Ryan and I were in our teens.

We experienced the mental, emotional, and physical changes that all teens have to endure, and living with our Mom’s disease became a bit harder...trying to deal with these changes within us as well as the constant deterioration of our matriarch proved to be a difficult journey to say the least. We both went to sleep with one eye open, in case we heard the all too familiar screams in the night letting us know that she had fallen. Our hearts leapt into our throats as we raced to her each time that this happened, and each time it did our worries grew just a little bit more.

It was during these tough moments that we realized that were everything to each other. That try as they may, no one else could ever come close to knowing what we went through: that without our tightly knit bond, we wouldn’t have even made it this far.

So beyond the complexity of what was happening within our family unit, Ryan and I decided that we would make a pact. One of us would at all times remain with our Mom...to take care of her, and be with her through the difficult journey that life had given her to travel.

After high school, Ryan decided that he wanted to pursue his studies, and I had been given the opportunity to travel as a model. He remained with our mom, commuting an hour to and from school to stay by her side. I on the other hand, began my journey into the modelling realm which took me to Europe, Asia, The U.S.A, Australia, and eventually Africa. I spent many years travelling the globe posing for high profile magazines such as Vogue, campaigns such as L’Oreal, walking the runway with the biggest models of my time, and experiencing almost every country and culture imaginable.

These years proved formative indeed, showing me the wide-open opportunities that this life has to offer. But all the while, my heart remained home... with Ryan and my mom. I sent money home when I could, called as often as possible, came to visit as much as my schedule and finances allowed, brought my brother to visit me in Europe often... but my heart never really left them, and I never really felt like I was doing enough.

I think that this is a common feeling within families that live through terminal illness; that nothing is ever enough... not time, or money, or support... and at the end of the day we would all probably give everything we had just to make it better. But at the end of the day it will never get better, and we can only do what is humanly possible.

It is with this thought in mind that I started the journey that I now find myself on. Living in South Africa, running to create awareness and raise funds for Muscular Dystrophy. Challenging my body to move its’ muscles the way that those with Muscular Dystrophy can’t...the way that my Mom can’t. And through blood, sweat and tears, that is what I am determined to do.

Running has been a part of my life since I was a little girl... racing through the Canadian Rocky Mountains, bounding over fallen trees, and feeling at one with forest made me feel alive.

My love affair with running continued when I began to compete in cross-country races, as well as 800m, 1500m, and 3000m in track.

Although I excelled in my age group, running became a constant struggle for me physically, our move from Ontario to the higher altitude of the ‘Rockies’, had brought on a form of ‘stress-induced’ Asthma.

Even with the aid of inhalers and the strength of my legs, the running took its’ toll... and I was advised not to continue. But being as determined as I am, I never gave up and continued to run all through high school, gaining recognition provincially.

When it came time for me to pursue my career in modeling, I realised that my running was not conducive to my new lifestyle. So it became a source of physical upkeep and release, rather than a competitive sport. I never quite let it go, but it fell to the wayside as many things do in life.

Being introduced to the wide world in all its’ glitz and glamour, I pursued other interests such as music, drama, languages...and found other ways to fill my soul... but somehow my love of running never let me go.

Throughout my travels I constantly tried to make contact with the local Associations for Muscular Dystrophy, to see how I could help. I ran as many runs for MD as I could, always raising funds and helping to create awareness.

But even still, I never quite felt like I was doing enough. And it wasn’t until I came to South Africa that it all came together, and I realised how I could make a difference to the best of my ability, and use my love of running to do it. I would make my muscles move for those who can’t.

Upon deciding to move to South Africa, I contacted the Muscular Dystrophy Foundation of South Africa to see how I could be of help. After discussing my ideas about fundraising and creating more
awareness for MD, they asked that I meet with the national director.

Right from the start the foundation has happily brought me on board, and supported my running endeavours.  For them and the cause, I have run half/full marathons, ran the Two Oceans Ultra marathon, and will be competing in several trail and road runs in the year to come. I will be wearing my MDFSA jersey proudly, and hopefully inspiring others to motivate themselves... to achieve great things and change people’s lives.

Because at the end of the day, that is what I believe in the most. To ‘be the change you see in the world’.  

My Mom is now unfortunately bedridden, having been so for over 10 years. Ryan has stayed with her the entire time, taking care of her as the sole caregiver up until a few years ago, when Mum started requiring the help of special care workers.

My mom has been my inspiration throughout this entire journey, and I owe her more than I can ever repay. Not only has she taught me that believing in yourself will allow you to achieve your dreams, and that no obstacle is insurmountable, but she has also shown me that no matter what our circumstances we can always take the time to help those who need it most. For this, for my life, and for loving me unconditionally, I thank her from the bottom of my heart.

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