I have a confession to make: saving my sister will not be easy. This is not a new revelation on my part. In fact, no one in our family ever claimed that our mission to save children like Taylor would be a piece of cake. Some days (many, in fact), we search for the answers in a pitch-black world, with seemingly no hope to light our way. But we must never stop searching. We must continue this journey – if not by sight, then by faith.

Sometimes, I let several weeks pass between blog posts. If I’m not writing, I’m searching. Searching for what? God only knows. Hope? Salvation? Happiness? Eventually, I find my words. Often, they drift toward running.

I cannot run at the moment. I tore my Achilles playing soccer three weeks ago – the culmination of a less severe injury that originally occurred two days before I ran a 10-mile road race in Taylor’s honor. So I run in my mind – on cool, damp sand by the sea as the sun sinks behind a low cloud, or a field of wildflowers in a high mountain meadow – but never the unforgiving pavement.

Charlotte Benson, the mother of a child with Batten disease, is not a runner. But Charlotte understands the difference between a sprint and a test of endurance. She understands that our shared battle is a test of the latter. She knows that often in our long race to defeat this monster, we must run in the dark. 

I am injured, and Charlotte is not a runner. We have never met. And yet, we are running together – through the deepest, blackest darkness that is Batten disease, buoyed by our faith and the incredible gift of each other and the sick children we love.

Thank you, Charlotte, for your beautiful words. On their wings, I’ll run toward the light for another day.

Run to the Sun, by Charlotte Benson

A year ago, Lance Thompson, our good friend and avid runner, came to us with an idea to organize a 100-mile overnight relay run to raise money for the Foundation. Admittedly, I’m not a runner, and my first reaction was, “Who in the world is going to want to do that?!!” But as the idea evolved, and he shared his vision of a race whose course would meander under the starlit sky of the Texas countryside and culminate at a stunning destination at sunrise, I began to understand. Now, less than two weeks away, that vision will become a reality on May 14 when 30 teams of eight people each will compete by running a rugged Hill Country 96-mile course starting at Mount Bonnell and ending in the dawn light at Enchanted Rock. Members of each team will follow the route together in a van to support their runner and cheer him on as he steps onto the course alone to face his own unique challenge in the dark. Lance wanted the participants to experience first-hand the physical darkness and challenges that a child who is blinded by Batten Disease faces. It has been transformative to watch Lance’s ambitious dream become a reality and I am struck by how incredibly this race also mirrors our own life, and so perfectly mimics the mission of the Beyond Batten Disease Foundation. I love the way God inspires us only later to reveal His full intention.

As parents of a child with a terminal illness, there are so many unanswered questions. This not only is a race against time to find a treatment or a cure for our own daughter, but it’s a journey through the dark, facing the fear of running alone, and not knowing what obstacles and challenges lie ahead. The verse that continually comes to mind and is such a great source of comfort is 2 Corinthians 5:7, “For we walk by faith, not by sight.”

Our foundation was built by our family, our friends, and our community, all of whom have shared their talents, their gifts and their resolve to achieve the same goal. We have set out to accomplish something that has never been done before……..to eradicate Batten Disease and 600 other rare diseases through our carrier screening test. It’s a journey where friends and community follow us closely and offer support and encouragement. It’s a journey where everyone brings their talent and strength and sews them together to form an unbreakable bond: a resolve to commit, to endure, and to finish what we’ve set out to do.

This race is not a sprint. It is an endurance event that requires the commitment and support of a team. There is an African proverb that says, “If you want to go fast, go alone. If you want to go far, go with others.” God has provided for us with the incredible gift of our community, our “team,” which perseveres. These runners do not face the challenge of this course alone; our foundation does not face the challenge of Batten Disease alone. We are a team.

And best of all, we have charted a course. We are not simply running in the dark, aimlessly wandering from hopelessness, to fear, and despair; we are running to the sun, to the light, to the hope, to the dawn of a new day where Batten Disease no longer exists: our own Enchanted Rock. For light emerges from the darkness and morning is born from the womb of night.

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