By Danielle Torley
125-degree heat across sandy and uneven terrain.
A backpack of all your food and supplies.
One runner for one little girl.
Would you do it?
Richard Torley did. On April 5, 2015, Richard began a run that the world has deemed the “toughest footrace on Earth.” It was the 30th anniversary of the largest stage race called the Marathon des Sables (MDS) in Southern Morocco across the Sahara Desert. He set out with 1,350 other people for six days, running a marathon each day the first three days, two on the 4th day, with a rest day on the 5th and the final marathon on the 6th day to the finish line.
One of many factors that make this race so tough is that it is a self-sufficiency race across a desert. Each runner has a backpack weighed down with everything they need for the week including food, medical supplies, camping and toiletries. They are supplied a certain allotment of water each day and emergency medical care if needed. The MDS format includes predetermined miles and the route for each day. Where the runners end that day becomes their camping spot for the night and the starting point for the next day.
So why did he do it?
Let’s just say it was a perfect point in time where passion met compassion. Richard has a passion for running and, up to this point, had run many races from 25K to 50 miles, but nothing of this magnitude and under such treacherous and unpredictable circumstances and heat. People have died attempting this race. But despite it all, running the MDS was something Richard had jotted down on his bucket list over 10 years ago. His wife, Danielle, persuaded him that the timing was now, despite both working full time and having two small children.
Not only did he have a few close friends doing the race, which meant a support system to train alongside, as well as the accomplishment of finally being able to check this one off his list, but he also knew a special little girl named Celeste who had some very special needs that cost quite a bit.
This run would accomplish it all!
You see, Celeste, the three-year-old daughter of the Torleys’ long time friends Scott and Melanie Mulder, has Aicardi Syndrome, a very rare neurological disease affecting only about 900 children in the United States and almost exclusively females.
This rare syndrome is characterized by a few key traits:
· Partial or complete agenesis of the corpus callosum, a part of the brain that connects the two hemispheres of the brain
· Infantile spasms, is a form of childhood seizures (Celeste has three different types)
· Chorioretinal lacunae, an eye abnormality where holes are present in the retina of the eye
Aicardi Syndrome may also be associated with other brain defects and features such as cleft lip and scoliosis. There is no cure for this syndrome and treatment is based on managing the symptoms of each individual patient.
Celeste’s symptoms include three different types of seizures with a medication for each one. Scott and Melanie work really hard to keep Celeste’s immune system strong which, when compromised, interferes with these medications and worsens the severity and frequency of her seizures. Early intervention therapy several times a week is the norm for their family, in addition to the many doctor visits and lab testing required for her. Life for the Mulder family, including two-year-old brother Asher, is full and often means passing on many social and family gatherings or leaving early for the well-being of Celeste. Life is also in and out of the car quite a bit to make all their appointments. So seeing to it that this family would be able to purchase items to help make things just a little bit easier in the middle of so many challenges was where Richard focused his energy and his heart. His goal was to use the MDS as a vehicle to raise $5000 to purchase a much-needed wheelchair lift and car seat for Celeste.
So how does one mentally and physically prepare for a physical feat of this magnitude?
Certainly, we have lots of sand On the Coast but let’s face it - our moderate heat and beautiful flat white sand is no comparison to the extreme temperatures and sandy ascents across the Sahara Desert. So back-to-back long runs across the sand and signing up for as many local 25K to 50K events as he could would be the best Richard could do to prepare physically.
Mental preparation is a whole other challenge! Each day for six days, Richard would have to endure another 26 miles before being able to stop for the night. He knew he would need something greater than his physical ability to draw upon to push through the exhaustion. Maintaining a resolved focus of the goals at hand and remembering that he is not alone in this were the mental markers he would use to finish the race. And he definitely was not alone! Richard had a tremendous support system from family, friends and many businesses that helped him train and prepare all along the way, including his own employer, Synergy Wireless Solutions, who remained incredibly supportive throughout. So he channeled all this support with his passion for running and focused on meeting the needs of Celeste to help drive him through the bleakest moments.
“Going into MDS, I knew it was going to challenge me as much mentally as physically. During training I tried to visualize as many positive things in my mind as possible in hopes I could draw on it in the Sahara. It wasn't hard to focus my thoughts back to running on a white beach in Florida as the sun was coming up. Sometimes, though, it wasn't enough. Extreme temperatures, mountain ascents, endless dunes and sandstorms meant that I had to draw from deep within. Barring injury or illness, I knew I would finish- it's not in me to simply give up - so it was more a question of how far I could push myself. There were times, especially on Day 3 and the 57-mile Day 4/5, where I hit low points and would start walking. But then I would remind myself how fortunate I was to be there and how children like Celeste and others would never have this opportunity. It drove me on to run and kept me moving forward.”
And that’s exactly what he did! Not only did he complete the MDS and raise the needed funds through Crowdrise.com for Celeste, but he finished 84th out of 1350 participants. What Richard Torley physically accomplished is nothing short of amazing, but to endure and bear such difficult circumstances for the love and compassion of another is, without a doubt, a true reflection of William Barkley’s words when he said,
“Endurance is not just the ability to bear a hard thing, but to turn it into glory.”
One bucket list goal.
One little girl.
Where passion and compassion collided.
I asked Richard, “What’s next?” He admits he has both the Boston Marathon on his radar as well as the Ironman event, but both are on the backburner while he supports his wife who is training for the Pensacola Triathlon in May.
In the meantime, Crowdrise.com/milesforceleste is still open for donations. As Celeste grows, so will her needs. Even though the initial goal was met for the lift and seat, the next immediate need for the Mulders is to remodel a bathroom to accommodate a roll-in bathtub for her. Visit Celeste’s page to read more about her journey and to donate if you would be a part of blessing this family as they seek ways to improve her quality of life.