Neil's 160km Race for Kids

Why Do I Run?
Part 1: For Jacob


There are some moments in your life which you will always remember. The moments where you can remember the exact words that somebody speaks to you. This was one of those instances.

Neil holding Jacob's bear and hat “Your baby has something called Bilateral Renal Agenesis, or Potter’s Syndrome. This is what is termed, a lethal diagnosis.” These are the words the neonatal specialist told my wife, Haylie and I during our visit to Victoria Hospital, London Health Sciences Centre.

I can’t really even describe the feeling of hearing those words. Shock, grief, sadness, disbelief? None of them do justice to what we felt in those moments.

Potter’s Syndrome meant that our baby was not developing kidneys, or a bladder. As such, they were incapable of producing enough amniotic fluid. We were told that the cause of this condition is unknown, that we could have done nothing to prevent it, and that it is a 1 in 5000 type of occurrence. The doctor explained that there was nothing that could be done for our baby. Nothing.

This helplessness was especially hard to deal with. As a parent, a huge part of your job is protecting your child. I was powerless.

In the end, we both came to the same conclusion about what we wanted to do. Neither of us could bear the thought of terminating the pregnancy. We still wanted to have the opportunity to hold our child. We would have the baby.

On the afternoon of October 23, 2014, our baby was born. As expected, our baby was stillborn. His gender was finally revealed, and we officially welcomed Jacob Carter McKay into our hands, our family, and of course, completely into our hearts.

Jacob weighed exactly 1 pound, but the weight and impact that he has had on my life is immeasurable. My wife and I spent some time alone with Jacob. We were told that we could spend as much time at the hospital as we wanted to. We took a number of pictures to help us hold onto the memories. Pictures with us, as a family.

In reality, we probably could have stayed there forever. How do you let your child go? We ended up staying at the hospital with Jacob for about seven hours. To this day, it is still a little hard to believe that we went through this experience.

Why Do I Run? For Jacob I went and got the car while the nurse took my wife downstairs. With us, we took a memory box which had a number of items from the day, the measuring tape Jacob was measured with, some of the clothes he wore, and so on.

We made the drive home, still in a state of disbelief that this had happened to us. Not only did it happen, but it had all transpired within less than a few weeks.

I have a number of rituals and ways that I stay connected to my son. When I look up at the sky and see even just one star, I feel connected to Jacob. When I hear certain songs, I feel connected to Jacob. When a butterfly flutters by, I feel connected to Jacob.

But perhaps most of all, when I run, I feel connected to Jacob. He was with me for my first marathon, and he’s been with me for all of them since.

In August 2020, Neil will be running the Foxtail Hundred Rail Trail Race in Dundas, Ontario to raise money for Children’s Health Foundation, in honour of Jacob, his daughters Hadley and Eleni, and all of the children and families who use the services provided by the Children’s Health Foundation.

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Keep Reading:

For Hadley | For Eleni


Neil’s story has been featured by:

Canadian Running Magazine
CTV News London
The London Free Press
Through Not Around: Stories of Infertility and Pregnancy Loss







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