Monday, December 14, 2015

All I want for Christmas is a cure for DMD

(the following is a letter I sent to the Township of Langley Firefighters) 

Doug is my 13 year old son, and he has Duchenne Muscular Dystrophy (DMD). You may have met him at the Langley Firefighter’s Appreciation Banquet this year.

For many years, the Langley Firefighters have joined with firefighters around the world to raise funds to support families like ours. We appreciate it greatly. Without the support of groups like yours, Muscular Dystrophy would be an impossible battle to face alone.

Since the time he was just 8 years old, Doug has been involved in a medical study for a new drug aimed at dramatically slowing the progression of DMD. A typical DMD boy will transition to full time wheelchair use by the age of 11 or 12, and has a lifespan of 20-30 years. This new drug is looking to change this.

Doug joined the study in the summer of 2011. For the next 3 years he made weekly trips into Children’s Hospital for drug injections and testing. It was a painful ordeal – each injection hurt, and the batteries of blood draws, MRIs, EKGs, muscle biopsies, and other treatments were exhausting. But there was promise. Where decline was expected, we found stability. Instead of moving towards a wheelchair, Doug’s walking distance got longer and longer. His balance improved, and at the age of 11, instead of riding in a wheelchair, he was able to go on walks in excess of 2 miles long.

Then, the drug changed ownership. During that period, the study was halted, and in the 18 months it took to get restarted, we watched our son decline. We weren’t doing long walks anymore – a couple of blocks was Doug’s limit. He began to need to crawl up the stairs instead of walk. Our hearts broke.

A couple of months before Doug’s 13th birthday, the study started up again. Doug once again was on the medication. After a few months his decline slowed, and after 6 months in, it seems to have halted. We have met with other boys who have gained back some or even most of their lost time. We are hoping that as time goes by the medication will help restore Doug’s lot time too.

The FDA is deliberating approval of this game changing drug. It is called Drisapersen. They aren’t sure what to do. The effects in the statistical data are not matching up with what families like ours are seeing. About 20 families like ours travelled to Washington DC to make our plea in person last month. The drug must be working for so many people to have such dramatic evidence.

The FDA has a timeline of Christmas Eve to decide on whether to allow this drug onto the market. This would make it the first and only treatment for DMD. We need your help to convince them that patients who have proven this drug works should continue to have access – and to allow boys who couldn’t participate in the clinical study access to this life saving drug. Without it, there are no other options. This drug will not work for every DMD boy – but surely those who respond to it should be allowed continued access!

Please sign this petition. This petition was started by Gavin’s mom. Gavin is a friend of Doug’s who was in the same study at Children’s Hospital. His story is just like Doug’s.

Nearly a year ago the FDA was dragging their feet on whether or not to even review this drug. A petition started at the Whitehouse managed to raise over 100,000 signatures over the 30 days it was open. Shortly thereafter, the FDA accepted Drisapersen for review. Your voice makes a difference.

Please sign the petition and share it. I can’t think of a better Christmas gift for Doug, Gavin, and all the other DMD boys.

Cam Penner

(Doug’s Dad)

Monday, September 8, 2014

A Sea Story

Let me tell you a little story about a sailing ship, on the high seas of the northern Pacific...

Once upon a time, a ship was sailing across the great ocean, a storm came out of nowhere, and after lashing the ship with wind and waves for what seemed hours on end, it swept one great wave across the deck of the ship, and faded away.

It left in its wake a tangled mess of ripped sails and ropes - the ship's dory and life rafts torn and scattered across the waves of the sea, swept across the horizon. All on board were spared from injury but one. One small boy was swept  away from his family, and off the deck by the last wave, and tossed into the cold unfeeling hands of the Pacific Ocean.

He cried for help, and immediately the crew spotted his head - bobbing up and down with the waves. Terror in his eyes as he struggled to stay afloat. In the cold Pacific, it takes but 20 minutes of exposure to be fatal. After only 10-13 minutes - unconsciousness sets in - and rescue becomes more and more difficult. The clock was ticking.

The crew were first rate sailors, and immediately the ship set course to rescue the boy overboard. Immediately the captain noticed the lifesaving gear the storm had ripped away, and formed two task forces.

To the first, he assigned the task of replacing the dory. A makeshift raft, and the means to launch it from the storm torn decks high above the sea. This was to be the replacement lifeboat - for this rescue, as well as those to come in the days ahead, as the storm threatened it's return. The crew worked furiously lashing together planks and rigging pulleys and tackle. They were making progress by leaps and bounds - but their solution was going to be an hour or two away. Far too late for the boy in the ocean. Still, they threw all they had into their task. Heart, mind, and soul.

To the second task force, the captain assigned the task of doing whatever they could to keep the boy alive until the liferaft was ready. Working with the material they had at hand, they fashioned together a makeshift life preserver out of old clothes and hastily filled hot water bottles. It wasn't pretty, but it did seem to offer some buoyancy and warmth, and a mere 9 minutes after the boy was swept over, the crew managed to toss the ramshackle device near enough to the boy for him to cling to. All eyes were glued to the boy - would it be enough? The minutes began to tick by. First one, then 2 minutes passed. The boy was still afloat - now in the water for over 10 minutes. It was sometimes hard to tell, but he was not fading as fast as before. But his head still bobbed in the water - would it be enough?

Suddenly orders were shouted, and the ramshackle clump of hot water bottles and old clothes were pulled away. Pulled back up to the ship so they could be examined to see how well they were working. Alone again on the waters the boy began to struggle. Cold waves lapped over his head and his strokes were beginning to weaken. Clearly he was doing worse now, back on his own, than he was with the device. The task force argued amongst themselves about whether or not it was working, only to be called up short by the anguished wail of the boys family aboard the ship. "Have mercy!" they cried - begging the crew to redeploy the device, beseeching them to give the boy a chance. Minute after minute passed, as the crew wrestled with whether to re-deploy the only chance the boy had of surviving until the raft was ready. The decision to throw it out to him again was made - but by this time, the exhausted boy was nearing the point of unconsciousness. The boy grabbed back on, but by this time the cold sea had stolen the strength in his arms, and his leaden feet were not strong enough to hold on. And he began to slip away...

Duchenne Muscular Dystrophy steals the ability to walk from most of its victims between the ages of 10 and 13 years old. Doug was on a promising new drug from the age of 9 to 11 - and we felt it showed a noticeable improvement in his daily living strength and endurance. The problem is that measurement of results of treatments on this disease are difficult. The drug didn't meet the manufacturers hopes, so they stopped the study to "analyze the results". It has been a year now of "analysis" and despite the crying out of parents, promises of re dosing are still months away. Today is my son's 12th birthday. Our kids are slipping beneath the waves. We can see it each and every day.

Please urge researchers and regulators alike that unnecessary delay and deliberation is not just delaying the treatment and cure - it's costing us our children.

- an anguished parent.

Monday, June 4, 2012

Ride For Doug 2012 – A look in the rearview mirror

Today is the morning after the 6th annual Ride For Doug.  What an experience.  The day starts in an empty parking lot.  A cool breeze blows, and the clouds tease us with hints of rain.  A deep rumble begins, but rather than rain bringing thunder, it is the sound of riders beginning to arrive.  Black leather, shining chrome.  The smell of power.  I close my eyes,  taking in the sensations, holding the hand of the boy that made it happen.  Today is Doug’s day.  These are his friends arriving.

Bike after bike arrives.  Riders from all points of the compass, harking news of the weather.  A drizzle here, a cool breeze there.  Nothing that can stop these riders from coming.  They are here for Ride For Doug.

Doug is on cloud nine.  He wanders from rider to rider with a keen sense of purpose.  He remembers who has come before, and welcomes those who have come for the first time.  Bikes are admired, and many questions are asked and answered by patient bikers with soft hearts.

And still they arrive.  The black and chrome is punctuated by bright flashes of colour.  It doesn’t matter what style of bike you ride today.  Long sweeping cruisers intermingle with high strung sportbikes, a peppering of dual purpose bikes providing a dirty contrast to the gleam and shine.

Once assembled, the ride is ready to move out.  Eighty-eight bikes speak with but a single voice.  Eighty-eight bikes forming a column of support stronger than any bridge girder, and stretching further than the eye can see.  Doug rides up at the front with me.  His sister Samantha, on a bike beside him.  His mother Allison, on a bike behind him.  I can feel him taking it in, turning to watch the long snake of bikes travel up and down the undulating road. 

This is the point where I am usually moved to tears.  This show of support strikes deep to the core.  There is nothing in the world that can match such an overwhelming experience. 

And it’s not just the riders.  To get to this point has been hours and hours of work by a multitude of volunteers.  Showing their support with the horsepower of their actions.  They are with us on the road – perhaps not on two wheels, but definitely in spirit.

We head through the roads of Langley, Abbotsford, and cross into Mission.  The weather is holding, the leather staying dry.  Our first stop approaches.

At the BC Hydro Recreation Area by Ruskin dam – the riders are greeted by an enthusiastic team of volunteers.  Pointing the way and cheering us on.  I can feel Doug’s face beaming behind me.  Nearly a hundred bikes stream into the lot, and the riders dismount for a stretch.  Stories are being shared with friends and strangers alike, and smiles abound.  The volunteer team at the rest stop provides water – enthusiastically delivered to the riders by two boys around Doug’s age.  This is not their first Ride For Doug either. These bearers of water have volunteered before, and have taken the spirit of The Ride throughout their year – bearing the flag of Muscular Dystrophy on behalf of Doug.

Another highlight takes place here.  Doug’s sister, Samantha, and her grandmother have spent the weekend baking cookies.  Riders who are RFD veterans make a beeline for her basket.  The smiles grow. Three hundred cookies are consumed faster than the starting grid at a Grand Prix race. It seems Samantha has found her own way to support Doug, and Allison and I feel a swelling of pride as sibling rivalry takes a back seat – at least for today.

Back onto the road we go.  Twisting and turning through Mission and some of my favourite streets.  The pavement here isn’t as smooth, and the corners are tight and blind.  These roads remind me of the challenges that Muscular Dystrophy families face continually.  A bumpy ride through life, never knowing what is around the next bend.  Gripping the bars and doing our best to navigate through a never ending series of challenges.  But then I hear it – the sound of exhaust echoing off the hills beside the road.  The thunder that tells me that I’m not riding alone up here.  My loved ones are close, and the community has gathered to ride behind me.  We can do this together.

An hour or so later, we pull into the second rest stop.  Through a quirk of fate, some of the riders near the back took a shortcut and ended up here first.  We arrive to the sight of 50+ bikes lined up and waiting.  Their riders just dismounting.  We share some laughs, and swap some stories of the road.  New friendships are forged in the common experience.  Happy volunteers spread water to thirsty riders, and their vibrant excitement (and fluorescent shirts) raise our spirits further.  These are some of Doug’s SEAs from school – joining in the celebration, and showing that they too are on Doug’s team fighting Muscular Dystrophy.

One more leg of the ride to go.  Another mile long rolling demonstration of resolve.  “We must beat Muscular Dystrophy”.  That is what the engines are saying.  “We must beat Muscular Dystrophy”.  My heart is strengthened with each mile.  How can we not beat it with support like this?  What disease dares to stand a chance in the face of Doug and his biker army?

The miles fall away, and almost too soon we arrive back.  The sun, greeting us as it pushes away the last of the clouds. But not just the sun - the parking holds another radiant sight.  Friends, family, and  a host of others greet the returning riders with standing applause.  As the bikes roll in, one after another, their engine still singing their song, the riders are treated to a royal arrival.  Because they are all heros.  Doug’s Heros.

We move inside to a BBQ.  A welcome sight to the hungry riders.  Tables fill with a mixture of over 300 riders and non-riders alike, and stories are swapped.  Bridges are built across cultures, and friendships are established in a common cause. The mosaic of people is as colourful as the bikes parked outside.  We have riders, extended family, friends.  Nurses and researchers from BC Children’s hospital.  Doug’s classmates, teachers, and administration.  Local government is represented.  We have families in the midst of their own battles with Muscular Dystrophy, and those who have lost loved ones to the disease.  Doug’s new friends are welcomed, and added to the mix.

We celebrate with food, and with door prizes.  We recognize the generosity of our volunteers and our sponsors – many of whom actually ride with us.  I have the opportunity to share a bit of what it is like for our family, as we are currently involved in a research project to treat Duchenne Muscular Dystrophy.  I think I managed to hold back the tears this year, mostly.  This year, the proceeds of the ride will be used to fund research for a cure to Muscular Dystrophy.

And then, it is back to the parking lot where we started.  Doug insists on seeing each bike off.  Thanking them for their support.  For the courage to face another year. 

As the engines fade away, their cry can still be heard in the distance.  “We must beat Muscular Dystrophy.  We must beat Muscular Dystrophy.”

Monday, March 1, 2010

Olympic Dreams

Vancouver has just concluded hosting the 2010 Winter Olympic Games. Along the way we've watched the city, and the country come alive. We've celebrated together, we've cried together, and we've done a lot of holding our breath in anticipation. The hopes and dreams of the athletes were worn proudly on OUR sleeves, as we joined them in the worlds largest celebration of sport.

And at home, the children of our nation began to dream. Kids from all walks of life instantly became speed skaters, and skiers. Ball hockey games awarded the Gold Medal - Lord Stanley's Cup lying dusty on a back shelf in the garage. Skateboards came out, carving graceful arcs down the steepest driveway in the neighbourhood, in search of the next snowboard parallel slalom medal. People began to dream, and to dream big. The message was there - put your whole heart, your whole mind, and your whole body into a dream, and watch the world cheer you on. Nothing is impossible to the human spirit. Nothing.

At our house, the dream was stirring too. Our family watched the games daily. We even made it out to a couple of events. Our kids saw the flame run past our house - igniting the passion and the dream.

And so it was with no large surprise that we began to hear about Olympic sized dreams. One day, Doug was spotted standing at the top of the stairway. He had hot wheels race tracks strapped to his feet, and a Viking helmet perched high upon his head - brandishing a sword as a pole. He proudly announced to the world that he was going to be an Olympic Alpine Skier. My heart began to swell with parental pride at his dream, only to be burst an instant later with the realization that this dream will never be. No matter how much heart, or mind he puts into it, his body just won't be there. I know that for most of us, the actual chance of having an Olympian as a child is so tiny that it doesn't really matter anyways - but the sharp pain of KNOWING that it won't happen is still there.

Olympic sized dreams - human sized reality.

Monday, January 4, 2010

Beginning with an Ending

2010. January. A time for new beginnings.

After the kick in the teeth year that 2009 turned out to be, I was actually looking forward to 2010. A fresh start always brings with it a little bit of hope. The chance that this year won't suck as much as the one before. A symbolic chance to start again. A New Year's resolution to live more, love more, care more. And yes, to blog more. A fresh page, covering over the deep ink blots of the previous 365 days.

2010 was but 3 days old, when Ryan left. Ryan was a young man, fighting the same battle as Doug with DMD. On January 3rd, 2010, Ryan's battle ended. Ryan was a young man characterized by courage, quick wit, and a friendly sense of humour. Muscular Dystrophy claims another young life, barely in its prime.

I don't really know what to say. This strikes close to home. Of all the roads in life you can travel, Ryan and Doug share similar paths. Ryan, up ahead, breaking new ground, and Doug, with his own young courage, following along. They only ever met once - Ryan and Doug. It was always on the "we should get together" list. Ryan was looking forward to "showing Doug the ropes". Instead of being self absorbed, Ryan wanted to pass along his knowledge and experience, to lighten the load for those coming behind. Selfless, honest, caring. And now, it's too late.

I should know by now that life is a finite resource. Whenever those you care for leave this earth, the bitterest pain is the realization that there will no more chances to get together. That postponement of that summer BBQ has just become permanent. It always makes me think about how the important things down here on this spinning globe are people. It makes me re-evaluate my priorities again. Why am I not spending more time with PEOPLE, building friendships - laughing, loving, and sharing pain? What else is taking my time that seems so important?

Ryan, I barely knew you - but I miss you. I knew you mostly through your dad, and the conversations we would have. I shared your triumphs and your struggles vicariously through the words of your family. And now, I too share their loss.

Farewell Ryan.