Before Mabel's diagnosis of Batten Disease I had done months of research about all types of rare disease. Early in 2012, after we met Dr. S and he gave us a long list of diseases and syndromes he was testing her for I began getting more specific in my searches.
I will never forget the night that I typed in NCL for the first time. It looked like every other disease that Mabel may have. She fit every symptom but at this point it seemed unlikely that we would get an answer. When I noticed that NCL was often called "Batten disease" and I typed it in the search bar, I stumbled upon a man my age who had just finished a run across America raising money for children affected. He seemed amazing.
After Mabel's diagnosis a few months later, I reached out to Noah. We talked through facebook message a handful of times. Somewhere in that time Noah decided to launch his 2nd run across America, this time from Cali to Boston to once again bring awareness to Batten Disease. We began to talk more and before I knew it, Noah was officially on the run.
He says that he always wondered what it be like when he met Mabel for the first time. And now he knows. A few weeks ago, a little more than halfway through his trek, Noah met Mabel for the first time in person.
Over the last two months, when Mabel and I would be walking for miles at a time around our town, I would shoot Noah a good morning text with a photo of Mabel in the stroller or a picture of what the day here looked like. He would often reply with the same, saying he was doing well and was on his way. Soon our texts got more comical.
"Morning. Whatcha doin?"
"Walking, what are you doing?"
"Me too. Me too."
Awhile back I posted a photo to instagram and my caption read this,
"Noah and I have a lot in common. He walks/runs across the country, spending his days raising awareness for children like Mabel because his body is capable. I walk/run across this small town day after day to give Mabel the stimulation her body so desperately craves because her body is NOT capable. He pushes a stroller full of supplies. I push a stroller full of the exact purpose behind his mission. He walks for her and as I walk, I pray for him. Will you do the same?"
When we started "Mabel's Able" I knew right away that I wanted our symbol to be the button. A button 'fastens together.' I wanted our organization to be one that symbolized unity.
"Alone we are Rare. Together we are Able," was born.
I loved our catch phrase because everyone that I have encountered in Mabel's journey has inevitably been part of her story, part of my growth. There isn't anything that I do that doesn't involve the love of so many people who support me, stand beside me, and pray for me.
Noah feels the same about his run across America.
Every day I hear him say, "Everyone becomes part of the story."
And he means it.
He allows the American people to engulf him with support, encouragement, humor, and love. He remembers his encounters with them and he cherishes each and every one.
His run started out and continues to be about Batten Disease and the children and families affected but it has also turned into so much more than that. A story of kindness, goodness and over all compassion spread out across a country that, I believe, is begging for hope.
While Noah was in town he had the awesome opportunity to speak to 500 of our Jr. High School students. It was remarkable to see how interested they all were. And for me, it was overwhelming to sit back and see the large amount of people, once again, showing up for me in big ways. Ways that matter. Ways that are significant and intentional.
But it's not about me. And it's not about Noah.
I laugh because he says it so often, but truly...
"It's all about the children."
I was honored to have a few minutes to speak to the students as well. Noah's run is about the children affected by batten disease and their families. My mission as Mabel's mom has always been to educate the people around us about her and how they can help.
While speaking to the Jr. High students I hope that I empowered them to love people, no matter what they look like. My goal was trying to drive home the fact that this is our community and they need to love and care for people around them. They need to be willing to rise up and get to know someone who looks or acts differently than they do. And they need to know how important it is to always, always love-no matter what.
My mission is also about the children. On this day it was about the non-affected ones who will hopefully learn to love my girl and others in big ways!
We did a balloon release and I encouraged the students to never forget the site of 200 yellow balloons in the sky. Let it be a symbol of HOPE, I encouraged.
Noah's run is for all of us, truly.
He has met an overwhelming number of families along the way and I know that he is just as genuine with them as he was with us. I had the awesome chance to watch him interact with several families who are living and coping with Batten Disease and I am so impressed with his ability to simply love them.
What Noah is doing is life changing for families like ours. He is making a difference by giving a voice to a disease that otherwise has been very quiet. He has taken his life and dedicated it to something so much bigger than just himself.
And I know we can all learn a great lesson from that.
Noah is the 27th man to run across American twice and the only person under age 30 to have done it at all. When I look at Nora and Braden, I pray that they are inspired to go on and do great things that are epic and life changing because they will be capable! I hope that they have courage and strength and dedication to use their life for a greater purpose. I hope that they follow the Lord's direction and find their calling.
Noah has been a great inspiration and now I'm blessed to call him friend.
Please continue to support him in prayer.
And if you feel led, visit www.runcoast2coast.com to donate to Noah's run or batten disease.
You can also find him on facebook. "2013 Run Coast 2 Coast"