This is a special post that came up on my Facebook timeline from Father’s Day in 2015. It is a tribute to the many fathers I know who have sons who live with Duchenne muscular dystrophy. They continue to lead through their devotion and endless optimism. In some ways posts like this led to the concept that currently exists as Ted Tocks Covers. I hope you enjoy this sharing of old thoughts. Every word I share in this post is still relevant today. Perhaps even more so.
“Joyful the sound, the word goes around
From father to son, to son…”
-Queen ‘Father to Son’
On this day many of us will look to our father’s and say thank you for providing inspiration and support. The beauty of this day lies in it’s unconditional nature. There is nothing in the rules of fatherhood that says it will be easy but the best of them; and there are many, are always there. Being a father is like carrying a torch. Once lit, the flame always burns and it symbolizes the hope you have for your child’s future.
“Be yours to hold it high…”
This famous line reflects the commitment of a group of fathers who rise to a level of involvement that produces an enviable standard. These are the father’s of boys who live with Duchenne muscular dystrophy. This is a brief story…
“All the times that I cried, keeping all the things I knew inside, It’s hard, but it’s harder to ignore it.”
-Cat Stevens ‘Father and Son’
Thirty years ago John Davidson found out his son Jesse had a little known, incurable disease called Duchenne muscular dystrophy. This news was devastating, but he and his wife Sherene were not going to let Jesse be defeated without a valiant fight. After the initial shock they did some research and found out that there was not a whole lot happening in the way of research and resolved to change this fact. By 1994/95 Jesse’s Journey was born. John pushed his son Jesse in a wheelchair from the Manitoba border all the way across Ontario to the Quebec border at Ottawa/Hull. This walk made a lot of headway in creating awareness for DMD, but John was not willing to let the momentum subside. In 1997/98 John walked across Canada covering 33kms a day for 286 days. Over the last twenty years Jesse’s Journey has funded well over six million dollars in research and the endowment fund will fund over one million dollars in research each year for the next three years.
“When the dragons grow too mighty
To slay with pen or sword
I grow weary of the battle
And the storm I walk toward
When all around is madness
And there’s no safe port in view
I long to turn my path homeward
To stop a while with you.”
-Rush ‘Madrigal’
The torch was lit and John had done an admirable job. He needed someone to pass it to, so enter Bob (Grandpa Bob) Facca, inspired by his grandson Louie.Through two fundraising walks Bob and his family have raised approximately one million dollars for Jesse’s Journey and DMD research. The first walk was a 500 km walk in 2012, from London to Owen Sound, and the second was an astounding 4000 km walk from Quebec City to Winnipeg. Bob walked approximately 20 kilometres a day from May through November, 2014. This was an incredible feat of endurance and devotion by a father/grandfather. Those who were fortunate enough to be a part of Grandpa Bob’s team marvelled at his focus. He was motivated by one thing…to fund research for a cure for DMD. Bob carried the torch high, and he was in need of passing it on, which takes us to Andrew Sedmihradsky and his son Max.
“Shadows on the road behind
Shadows on the road ahead
Nothing can stop you now
There’s a shadow on the road behind
There’s a shadow on the road ahead
Nothing can stop you now
-Rush ‘Ghost Rider’
“When life lobs a challenge into your path, there are two options. You can roll over and play dead, or you can roll up your sleeves and get busy.” This statement is the way Andrew summarizes his dedication to his son. He and Max, who is four are leaving today on a 600 km bike ride that will see them depart from Parliament Hill in Ottawa and travel the Trans Canada Trail all the way to Hamilton. The journey will end on July 1st. The mission is to create awareness for Duchenne muscular dystrophy and to fund research for a cure. Like many Duchenne fathers Andrew is committed to doing whatever it takes until he realizes that goal.
“I’ll always be with you don’t forget
Just look over your shoulder I’ll be there.
If you look behind you, I will be there.”
-Phil Collins ‘Father to Son’
As they ride, the days may be long but one thing will remain constant… As long as Max looks over his shoulder, his father Andrew will be there, literally. There is something ever present about this group of fathers. This is a common trait among all of the Duchenne fathers I know.
“When you’re weary, feeling small,
When tears are in your eyes, I will dry them all; I’m on your side. When times get rough And friends just can’t be found, Like a bridge over troubled water I will lay me down.
Like a bridge over troubled water
I will lay me down.”
-Simon and Garfunkel ‘Bridge Over Troubled Water
These fathers approach every day with a mission; to make sure their sons have the best life they possibly can. In each case this involves doing whatever they can to help find a cure for the disease that threatens their sons’ lives. It is true. They are always there. Doing whatever it takes. It can be seen over and over again, at walks and talks, fundraisers and symposiums, boot drives and feats of endurance. In the last month I have seen these fathers walk many miles for their sons cause, cheered on every step of the way by friends and family. I have witnessed a father alter every aspect of his life to prepare to ride a specially designed bike 600 kms. I watched in amazement as a father in England literally carried his son on his back while completing an iron man competition. These fathers are committed to their sons in every way, because their son’s lives depend on their resolve. With the benefit of social media I get a view of some of these incredible achievements. Some of the courageous feats I see have been completed by people I don’t even know. Alex Smith and his son Harrison, Paul Miller and his son Hawken have done some astounding work to create awareness and research funds for DMD. Closer to home is where I have the definite connection. Any interaction with Duchenne fathers, Sean, Josh, Steve, Bruce, Lee, Rick, Al, Scott, Rob, Tony, John and many more always broaden my perspective on life and what is truly important. Closest of all is my brother in law Mike, who faces the challenges of fatherhood with a degree of grace and strength that is so obviously passed on to his son Eric. At the age of 15 (now 21), Eric is a marvel, who accepts every challenge that comes his way with the same grace and strength.
“May you grow up to be righteous
May you grow up to be true
May you always know the truth
And see the lights surrounding you
May you always be courageous
Stand upright and be strong
May you stay forever young
Forever young, forever young
May you stay forever young.”
-Bob Dylan ‘Forever Young’
The reality of DMD is unforgiving. There is no cure. While some may write off the future as bleak, this group of fathers approach life as though the uncertainty only represents a challenge. In their minds their only mission in life is to do whatever it takes to ensure that they deliver a cure in the lifetime of their sons. Nothing else matters.
“Before you cross the street,
Take my hand,
Life is what happens to you,
While your busy making other plans,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,”
-John Lennon ‘Beautiful Boy
From the miracle of childbirth the magnificent nurturing that is motherhood gives way in part to the magical bond between a father and son. There are experiences they share that belong only to them. In so many ways these experiences prepare them for life. For a father to communicate that he cares, and that he is aware, and is always there to share in the highs and lows is a powerful promise. These are the characteristics I have seen regularly among the fathers I have referred to in this passage. May you always be courageous, stand upright and be strong. You are all an inspiration to other fathers and most importantly to your sons. Your devotion will be rewarded.
“As I stand before you, watching the love turn around in my eye I’ve waited for so long for someone to care I’ve waited for so long for someone aware I’ve waited for so long for someone to share Having a magical child”
-Graham Nash ‘Magical Child’
HAPPY FATHER’S DAY! DEFEAT DUCHENNE! NO BAD DAYS!
Ted Tocks Covers 
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