Today is Rare Disease Day, and I can think of no better way to mark the occasion than by inviting you into our lives with one of the warriors battling one of the many rare diseases: our son, Ethan. He is four and a half years old (the half is very important to him), and he loves dinosaurs, building with Legos, exploring caves, eating snacks and climbing mountains.
It’s that last one that makes me stop and catch my breath, tears in my eyes every time I see him do it, because along with his love for all things Jurassic, Ethan was also born with heterotaxy syndrome and nine congenital heart defects. We first shared his story with you nearly two years ago just a few months after his fourth open heart surgery, the one where a surgeon spent nearly ten hours meticulously piecing together the four chambers that give our boy the strength to do what we’d always thought would be impossible.
Forging into the unknown by faith
We want you to celebrate with us today, to share in the wonder of what was made possible by a visionary team and a little boy who fights for his best life with every beat of his battered heart, but you’ll have to agree to a few things first. You see, those of us who live in the rare disease world know that there are no guarantees, so you’ll have to be willing to leave those behind and step out into the unknown. Rare diseases are those that affect fewer than 200,000 people in the U.S. One in every 10,000 babies is born with heterotaxy syndrome, and there are virtually no two cases of heterotaxy that are identical. While the road we walk with Ethan is one that might be similar to another family’s, we are the first ones to ever step foot on this one, and we forge ahead without a map. Can you gather the courage to walk alongside us?
Just a few days ago, we celebrated the two-year anniversary of the surgery that gave Ethan the chance to experience life with fully oxygenated blood and strength to explore for miles. Two whole years with a whole heart, and the best parts of it have been spent out in the forests and mountains he loves so much. For a small child, complex medical needs can be mentally and emotionally draining. While we’ve worked hard to provide him with the coping skills he needs to handle the hard stuff, we realized early on that he’s most at peace in nature. So if you’re journeying with us today, you’ll need to lace up your boots and hit the trails.
Fighting heterotaxy syndrome with nature
When we’re out in the woods together, you might not notice anything out of the ordinary about the little boy hiking alongside you. He’ll probably outpace you (unless he gets stuck throwing rocks into a stream; that can go on for hours). He’ll be sure-footed and steady while he scrambles over rocks and up into trees. You’d never know that his heart is powered by a pacemaker that fires with each beat, that that heart looks more like something Picasso dreamed up than the tidy Valentines on clearance in stores these days. If you pay close attention, you’ll probably feel yourself relax the further into the forest you get. You’ll certainly be able to see it in Ethan; his frustrations will fall away and you’ll get to watch him beam with pride every time he crosses a stream or balances on a fallen log.
As you walk this road with us, you have to be willing to accept that nothing will ever be the same as it was before you heard the name of a rare disease spoken over your child for the first time. Your life will be divided into before and after, and the halves will look nothing like each other. But here’s the part that seems impossible to believe on that dark day when everything changes: there will be joy. And it will be more intense than you ever dreamed possible. Mountaintops look different for each child with a rare disease. For some, they might be a single word spoken, a smile, a tentative step, a day spent outside the hospital. But when you’re facing these achievements with your back to the deep valley, every single one is a victory to be celebrated.
For our little hiker, the boy who was never promised a future, his best life is lived out among the trees and rocks and literal mountains that he runs up ahead of us. And we don’t take a single step for granted.
Share your thoughts about Rare Disease Day with us in the comments below.
- Ethan’s strength: trailblazing new paths with heterotaxy syndrome
- How one mom regained her health one hike at a time
- One mother’s journey to overcome postpartum anxiety and PTSD
- How nature can help in the battle against cancer
Written by Ali Chandra. Photos courtesy of Ali Chandra.