A Mother’s Story: Beyond Fear and Doubt – by Charlotte Benson

Robert Schuller once said, “I’d rather attempt to do something great and fail, than attempt to do nothing and succeed.” Life is full of successes and failures and eventually we are all faced with taking risks and venturing into the unknown. We may have to choose what college to attend, be faced with divorce, or we might even be taking our career in a new direction. The unknown can be exciting for all of its possibilities, but can also be a breeding ground for fear. However, sometimes we take risks simply because the desire to succeed trumps the fear of failure.

This was certainly true for Craig and me when we started the foundation.  After our daughter, Christiane, was diagnosed with a terminal condition called Batten disease, there was an instinctive impulse to do something positive to try to help her and change the trajectory of this horrible disease. The quick instinct to act can also result in long-term, unanticipated challenges and sometimes we find ourselves in the midst of a situation where there is no immediate victory and whose outcome is unknown.

This summer, I found myself in a similar situation contemplating all of these thoughts. I had received an email about an opportunity to go on a parent-child trip for some extreme hiking and climbing in the Canadian Rockies. I was so taken and enthralled by the excitement of an adventure I could share with my 12-year-old son, Garland, that I instantly knew it was something we just had to do. Without hesitation, I signed up for the trip and we planned to join a group of other travelers whom we had never met.

The group would meet in a remote lodge high in the Purcell Mountains in British Columbia and the trip would include climbing mountains, glaciers and waterfalls. We would cross suspension bridges that spanned deep canyons and walk along narrow cables that bridged gorges raging with the roar of rushing rivers beneath. Although every time I watched the promotional video I got sweaty palms, the thrill of this adventure and doing something I had never done before undeniably trumped any logic that may have applied.

When we arrived at the lodge, we met an amazing group of adventurous preteens and parents who were just as excited and nervous as we were to embark on what surely would be the excursion of a lifetime. We were given an overview of our 3-day itinerary, and the highlight would include a 6-hour hike and climb up Mt. Nimbus culminating at its 9000-foot summit where a free hanging rappel would conclude the outing. The climb was facilitated by a Via Ferrata, which is a system of cables, rungs, and suspension bridges that originated during WWII as a mechanism to move troops through the Italian and Austrian Alps.

We began the trek with a hike that took us to base of the first peak.  The terrain was steep and narrow with sweeping views of the snow-topped mountains that surrounded us. There were eight of us in our group strung out along the narrow path with a guide leading in the front and another in the back. The climbs were absolutely vertical and the Via Ferrata allowed us to clip on and off a series of cables that would ensure a “dangle” instead of a “plummet” should we lose our footing. As we climbed, we were often spaced too far apart for conversation, and the altitude made me focus on my breathing, so there was plenty of time for contemplation and to be lost in thought. As I climbed the first peak, I really had no awareness of what was coming next, I just knew I was going to the top. I was mostly enjoying the spectacular views and the vibrant colors of the majestic mountains and was in complete awe of the solitude they embodied.

As we climbed higher, my breathing became rhythmic and I focused solely on the next place my hand was going to grasp or where my foot was going to step. I just kept saying to myself, “You’ve got this, you’re almost there.” Soon, the wall had narrowed to a sharp point, and I lifted my head to realize that I was at the literal top of our first peak. I paused to take in the most incredibly breathtaking and wildly unexpected sight. There, far below my perch, surrounded by endless miles of mountains stretching far into the distance was a suspension bridge connecting the base of the mountainside I had just climbed to the base of Mt. Nimbus, the highest peak. That sight will be forever etched in my mind and I will never forget the incredible exhilaration and satisfaction of having just climbed that mountain sharply contrasted by the overwhelming challenge of what lay ahead and the possibilities beyond.

What a metaphor I thought. Like this journey, when we started the foundation, we were certainly motivated, and knew where we wanted to climb in finding a treatment or a cure, but had no way to anticipate every challenging step and obstacle along the way. And, now after climbing for 9 years, we too have the same glorious and unnerving view of a treatment now in sight and the endless possibilities that lay ahead.

Though we have climbed our first peak towards our goal, we still have to cross our own suspension bridge: funding validation studies, preparing patient registries, and engaging regulatory consultants to shepherd us through to a clinical trial. But by God, that glorious mountain peak is now within our sight!

From my perch on the mountaintop, I watched Garland cross the suspension bridge below. He was but a tiny dot crossing each wooden slat attached to two wavering cables, spaced eighteen inches apart. I wondered what he was thinking and how he was doing. This was not a risk whose outcome you immediately knew if you have succeeded or failed, this was an entire day of climbing and at this point, there was no going back. Isn’t this like so many of the risks we take in life? We get overwhelmed and distraught, and we wonder if we made the right choice because we never imagined that it was going to be this scary or this hard. We never imagined that we would find ourselves squirming to get comfortable in an uncomfortable or perhaps painful place that we actually chose ourselves! How do you manage that?  One thing I know for sure is that God does not put us on this earth to manage it alone. He gives us community and family and friends to encourage us along the way. When I think about climbing that mountain, with the support and camaraderie of a team, I remember what it felt like to hear someone call out, “Good job Charlotte” and the courage it gave me to navigate a tricky spot. I know what nine years of climbing the mountain of Batten disease has been like being completely surrounded by an incredible army of support. There is a knowing that God has charged our lives with this task, but there is no possible way we could have come this far alone. What a great reminder to pass along that kind of encouragement to others. Everyone is faced with challenges almost every day. A simple “you’ve got this” to a friend, or hug to your child, or a “way to go, you’re doing a great job” to a stranger may make the difference in the next step they take or might even give them the courage to persevere when they may have wanted to quit.

Once Garland crossed the chasm, I started my climb to the bottom of the first mountain peak to take my turn crossing the suspension bridge. There was only one way to cross it for me: as much as I was enjoying the natural beauty and the scenery, there was an intentional determination to miss altogether the view of the 3000-foot drop beneath.  So while steadying myself on the cables, I watched my foot as it reached for each wooden slat while completely blurring out the view below. I crossed the entire bridge without ever seeing the bottom of the chasm. One step at a time. Isn’t that how God wants us to trust Him? We can either focus on being faithful or focus on being fearful, but it is impossible to do both simultaneously. How else will we reach our goals if we become overwhelmed by every fearful step or obstacle and the enormity of our task? Where we focus matters, because fear and doubt will not cultivate perseverance or sustain us, but keeping our eye on the goal and keeping our focus on God will.  Believe that you are equipped with exactly what you need, trusting God, and be willing to take a risk. After all, how can He direct your steps if you are not stepping?

When we reached the top of the second peak, we had a glorious 360-degree view of quiet stillness and mountaintops that reached as far as we could see. It was utterly breathtaking and I cannot remember a time when I have ever smiled that much and felt so accomplished.  My mind raced back to the waves of panic and sweaty palms I had leading up to the trip. “What if” I had given in to the memory of Garland as a two-year-old clinging to my neck as we climbed a simple flight of stairs?  What if I had doubted that my newly operated hips would be able to carry me across? But more importantly, what if we had not taken the trip?  What if I had missed one of the most extraordinary experiences of my life and the thrill of that happy memory with Garland? We could “what if” ourselves to death in doubt and insecurity, but rather than paralyzing ourselves in the “what ifs” of today, wouldn’t we rather be able to look back from our rocking chair and recount our life with no regrets? I want to ask instead “what if I hadn’t taken the chance?” Because, in the end, I would rather fail trying to succeed, than live with knowing I never had the courage to try.

Though the rest of the summer was spent reliving the challenges and excitement of our adventure, I was most taken by how during the weeks following our trip, Garland walked a little bit taller, and there was an uptick in his confidence, as he was quicker to take on new challenges back at home. It reminded me of how our faith grows. Just like making it to the first peak gave us the confidence to take on the suspension bridge and Mt. Nimbus, our faith builds in the same way. Once God brings us through one difficult circumstance it gives us confidence in knowing He will do it again.

Romans 5:35 says: And not only this, but we also exalt in our tribulations, knowing that tribulations bring about perseverance; and perseverance, proven character; and proven character hope.

I am reminded of this as we face our journey pursuing a treatment for Batten disease. Craig and I believe that we are part of a bigger picture and that God has given us a task. It has been an extraordinary path of trials, difficulty, joy, pain, purpose and hope. He has blessed us beyond imagination and so lovingly gives us His grace and His strength in the midst of it all. As hard as it may sometimes be to see, we are confident that God brought us to this place and He can bring us out again according to His great purpose and plan…and that gives us hope.

And if hope is not enough, there is always inspiration. Though Christiane, who is blind, was not able to go on our trip, her spunk and spirit were with me in the Canadian Rockies, inspiring me every step of the way. Earlier in the summer, we took a family excursion to go on a zip line tour across Lake Travis so she could experience a taste of what our trip would entail. After careful assessment of two short practice runs, Christiane climbed the platform to take off for a long stretch topping trees and a scenic portion of the lake. About halfway out, she let go of the rope and wildly flung her arms open, and I could only imagine her smile and complete delight with herself as she whizzed across the lake hands-free. Like Christiane, we can all decide to believe beyond our limitations and fears, beyond doubt and insecurity and choose to see possibilities rather than limitations.  What if we all whizzed through fearful challenges hands-free? We could be confident in taking risks. We could live by faith, believing that God has a plan and our trials have purpose, and know for certain that real failure would mean not having ever tried all.  And, while we are at it, why not smile and enjoy the ride?

A Brother, A Sister and the Search for a Deadly Disease’s Cure

 

Below is an article that was written at the beginning of October. It’s a great summary of Garland’s effort to help his sister, Christiane. At the time of the writing, Garland’s fundraising total was about $90,000 and we are excited to report that his total is now over $151,000!

 

Garland Benson, a freckled-face 12-year-old with a winning smile, is on a mission – one that’s very personal, but could have far-reaching implications.

He just needs a little help from 100,000 friends and strangers.

Here’s why: Garland’s 15-year-old sister, Christiane, has juvenile Batten disease, a rare, fatal, inherited neurological disorder. It’s the same disease that was responsible for the July deaths of three siblings over the course of three days in Utah.

Children with the incurable disease suffer progressive vision loss, commonly followed within a couple of years by seizures and, as time passes, the loss of motor functions and speech. That’s followed by premature death, usually in the late teens or early 20s.

In 2008, the parents of Garland and Christiane, Craig and Charlotte Benson, formed the non-profit Beyond Batten Disease Foundation (www.beyondbatten.org) with the goal of helping find a cure. Through research funded by the foundation, progress is now being made on a treatment that, although not a cure, could slow down the disease’s progression, perhaps buying time for young people like Christiane.

The foundation is trying to raise $6 million that’s needed to help hurry that research along by getting it through an expensive validation and development process so that it can receive FDA approval for clinical trials.

Enter Garland, a boy with a big heart for his sister and an understanding that small gifts can add up to extraordinary amounts if the multiplication factor is large enough.

“I decided to raise $1 million of that $6 million on my own,” he says. “If I can get 100,000 people to give $10 each I’ll have $1 million. I think we can easily do that.”

With his goal clear, Garland confidently set out in March to achieve his objective – and do whatever he could for his sister and other young people who have the same disease.

Many donors have left heartfelt messages for him, such as: “Garland, you are the sweetest, best brother a girl could have.” “You inspire me to make a difference.” “Thank you for blessing your sister and so many others.”

Garland quickly found that his self-imposed undertaking wasn’t quite as easy as he hoped, but he has persevered and so far has raised about $90,000. His optimism isn’t faltering yet.

“I think it would be amazing if we find a cure,” Garland says.

Although Batten is genetic, and families can have more than one child with the disease, Garland does not have it. He’s not a carrier either, so he can’t pass it on to his children.

Despite the disease, Christiane is a cheerleader, has joined her family on ski trips and on horseback-riding adventures, and continues to be an inspiration for her younger brother.

“It’s really cool how she can do all that stuff and not be able to see,” Garland says. “But what I’d really like is for her to be able to lead a normal life like me.”

About Garland Benson

Garland Benson, 12, lives in Texas and is trying to raise $1 million to help fund research into juvenile Batten disease, which afflicts his sister, Christiane. The money is being raised through the Beyond Batten Disease Foundation (www.beyondbatten.org), which was launched in 2008 by the parents of Garland and Christiane, Craig and Charlotte Benson. The foundation’s goal is to help eradicate the disease by raising awareness about Batten and helping to fund research that could eventually lead to a cure. Those who want to donate can text the word HERO to 501051 and $10 will be added to their next cell phone bill. Donations can also be made through Garland’s donor page on the Beyond Batten Disease Foundation’s website.

 

 

Texas First Lady Cecilia Abbott opens her home to BBDF

Charlotte and Craig Benson with Texas First Lady Cecilia Abbott

We would like to give our heartfelt gratitude to First Lady Cecilia Abbott for opening her home to allow BBDF to share the message about Batten disease and the treatment in sight. Attendees were allowed to tour the beautiful Governor’s Mansion. We are proud to be part of cutting-edge research going on in the great state of Texas.

New York Stem Cell Foundation and Beyond Batten Disease Foundation Announce the Availability of Stem Cell Lines for Research

The New York Stem Cell Foundation (NYSCF) and Beyond Batten Disease Foundation (BBDF) today announce the availability of a unique and comprehensive collection of juvenile Batten (CLN3) disease induced pluripotent stem (iPS) cells. The two organizations partnered to develop this resource for scientists around the world. The collection is a key example of BBDF’s strategy to advance therapy development for Batten disease by creating and disseminating cutting-edge tools and other resources with game-changing potential.

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Research Update from Dr. Marco Sardiello

BBDF has partnered with Texas Children’s Hospital (TCH) to provide informational videos on the work being done at the Jan and Dan Duncan Neurological Research Institute (NRI) in Houston, TX.

In this video Dr. Marco Sardiello dives into BBDF funded research and the discovery of TFEB and it’s effects on lysosomal storage diseases, including Batten disease.

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