Love of family. Passion for life.

 

Christopher and I were so very blessed to be born into a loving family. A Filipina mother who showered us with love and a Chinese father whose love language was action was all we needed to thrive. They had very different upbringings, but both our parents left home young to explore the Americas. Our parents’ fearless spirit was infused into Christopher and I early on.

 

Our parents wanted us to experience and do everything we wanted, everything a North American life could provide. We had many friends, were involved in the community and played every sport. We were in Girl Guides and Scouts. We went to overnight camp and had the best family vacations. It was dad who taught us how to swim, skate and ski, after having taught himself these sports. Mom was our nurturer, always there to comfort and offering the soothing words we needed as we grew. Our childhood and youth wanted for nothing. 

 

 

 

Christopher's Story

 

As Christopher grew into his own, he found that photography helped express his more sensitive side. He was everyone’s best friend and favourite son. He could keep a secret and because of that all our cousins went to Christopher when they were in need of a confidante, help or a ride at midnight. It was photography that allowed him to be creative and purposeful.

 

Along with a friend from school, Christopher started a photography and videography company after graduating from Ryerson University. They did weddings and event photography but Christopher’s favourite was working with companies to showcase their businesses. He enjoyed the creative process that came with telling their stories which he did so beautifully.

 

 

When Christopher began to experience his first symptoms of ALS (amyotrophic lateral sclerosis) he was only 31 years old. He was playing indoor beach volleyball when he stopped being able to make plays that were normally easy for him. This was in January. By May Christopher was walking with a limp. He described it as feeling like he could not stretch his leg out. This is when testing began.

 

The devastating news came six months later. An ALS diagnosis comes only through process of elimination and a true diagnosis of ALS only comes from an autopsy after death. By the time Christopher was diagnosed, he could no longer swing a golf club or a baseball bat because he would lose balance and fall. He dared not ride his motorcycle either because his left leg began to give out without notice.

 

 

What is ALS?

 

ALS is a progressive neurodegenerative disease. Motor neurones that travel from your brain to your voluntary muscles begin to die and as they do, they leave your muscles atrophied. Most people have no complications with their brain, so as your body literally falls apart, your brain remains intact. A person living with ALS may not be able to move any of their limbs, they may not even be able to speak or eat, but they still hear you, have thoughts and feelings. ALS has been described as being a prisoner in your own body.

 

The struggle of living with ALS is a difficult one. Christopher needed 24/7 care about a year and a half into his five-year battle. You need help with everyday tasks, from getting dressed, eating and changing the channel on the tv. Family and friends can have a difficult time knowing how to relate to their loved one. The feeling of isolation is real.

 

 

 

 

Finding purpose through sport

 

The more I learned about ALS through my brother’s illness, the more I was convinced I needed to do something real to help. Soul-searching combined with a job I no longer found joy in resulted in my decision to start a new ALS charity. When I told my brother, his eyes became bright and he gave me the biggest smile.

 

We were watching a Blue Jays game when Christopher helped me named the charity. I started throwing out baseball terminology because of the connection between ALS and Lou Gehrig, a former major league baseball player. We came up with “double play” because we would only focus on two things, raising awareness and supporting research.

 

 

Movement filled with hope and joy

 

Christopher saw ALS Double Play’s first 5k walk in June of 2016. It was a hard day for him because he had just had surgery to get a feeding tube, but he really wanted to be there. I was so happy that he was. We had almost 300 people at the walk, all there to raise awareness. The atmosphere was bright and cheerful. I never want any of our events to be sad, ALS is difficult enough. I want people to feel hopeful and happy about helping the ALS community.

 

 

 

In addition to our 5k Intentional Walk for ALS, ALS Double Play holds a number of other fundraising and awareness raising events that revolve around sport and movement. Our annual volleyball tournament Spike ALS was started at Beach Blast in Toronto because Christopher played in a league there and his teammates wanted to do something to help. Sadly, Beach Blast has closed so we have moved our tournament to hardcourt.

 

 

Our annual yoga event Exhale Hope for ALS is also a tribute to Christopher because when he was first diagnosed with ALS, he and I took meditation classes together at a yoga studio I practiced at. It amazed me how strong Christopher was to foresee the need to learn to quiet his mind.

 

 

We also have an annual golf tournament. While I like to say I have the prettiest golf swing, Christopher’s definitely made the ball travel further! I think there’s a little bit of my brother in everything I do, after all, ALS Double Play was all inspired by his journey.

 

 

Christopher worried that after he left us, we would stop talking about him and telling his story. He said that if everyone did that, if everyone who lost someone to ALS stopped telling their story, nothing would ever change for the disease. I promised Christopher that I would never stop, not until we make ALS history.

 

 

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