We're sitting on a plane, 35,000 feet in the air, making our way to the most beautiful place in America, the Northeast Kingdom of Vermont.
This is our annual pilgrimage, where we trek across the country and visit the majestic land where Suzette was raised. It is a big trip for our family. Up at "Dark-O-Thirty", in a car, baggage check, through security, on a plane, deplane, on another plane and in another car. We usually get to our final destination 18 hours after our initial departure. Despite it all, this trip is always worth it. We step away from work, school, chores, soccer, traffic and spend our time with family and friends in God's country.
This pilgrimage is one of the ways that I've measured the time span of our family. First, it was just the two of us. Then +1 little one, +2, +3 and now we are +4. From flight delays and diversions, to getting kids through security, an angry co-passenger who couldn't understand why an 18 month old might cry, to keeping everyone busy and fed... we've seen and done it all on these trips.
This year, the trip is a little different. The trek through the airport, from the counter, through security to the gate and to our connecting flight is a lot of walking. Suzette and I talked about it ahead of time and decided that we would go ahead and get a wheelchair for Maya. We didn't really discuss why, but things have progressed to the point where walking long distances is so very difficult for her. She had recently used a wheelchair at Disneyland, which was a very difficult milestone for all involved, but it was the right decision and it worked out.
And there it was... the Fight that is Maya. The Fight that reminds us that although Maya's physical body is not doing well, her spirit is strong, and her will is unbroken.
Earlier this week, I received a call from one of the largest companies in town and they had heard about #FightingForMaya. I was told that their new CEO had selected Maya's story and the #FightingForMaya campaign as a story he wanted to share during his first company wide meeting. He wanted to share a story with his employees about the impact their work was having on the lives of so many dealing with rare diseases and how hard families and communities are fighting for the lives of their loved ones. I was truly humbled.
During the 24hrs after the initial call with the company, we scrambled to provide them with #FightingForMaya t-shirts and we discussed logistics. At some point, I received an email from the company with the subject line "[Company X] is #FightingForMaya" and it hit me like a ton of bricks.
Yes, we have done so much in a short amount of time, and no, this wasn't the first company to come forward and join the fight, but now... at this point in time, it is so clear that this project is going to make a difference. That Maya's fight, and your support are going to make the difference... not just for Maya, but for so many impacted by this and too many other rare diseases.
So this Friday, as you pull on your #FightingForMaya t-shirts, please know that Maya is still fighting, know that our message is reaching the right ears and know that we are making a difference.
Updated with a picture of the Illumina executive team.