Our Journey: The heart behind Helix 45
Our Colorado adventure began in 2014...
When we moved here with our infant son, Cameron. A little over a year later, we welcomed our second son, Landon. Born almost six weeks early, he spent 17 challenging days in the NICU. From the start, Cameron was obsessed with his baby brother, always wanting to play. Now, Landon returns that adoration, loving his "bubba" deeply. While they have their typical brotherly rivalry moments, their love for each other truly runs to the depths of their souls.
As Landon grew, it became clear he wasn't hitting milestones as expected.
After years in and out of physical therapy, our therapist suggested genetic testing – a recommendation for which we owe her everything, as it led to an early diagnosis. We saw a specialist, and less than 24 hours later, our world shifted. The three-year-old boy who couldn’t quite run or climb stairs was diagnosed with Duchenne Muscular Dystrophy. Initially, the diagnosis felt like a burden too heavy to carry. The life we had dreamed for him, for our family, felt like it was over. But after a few months navigating a cloud of grief, we began to find small ways to see life and experience joy again. We learned that life, indeed, goes on. And when the unexpected waves of emotion hit, we are now better able to find the beauty even in the brokenness.
We made a promise then:
Landon’s life would not be diminished or without purpose. We knew change needed to happen within us and for us. Robert began to research potential cures, a pursuit he has never abandoned. Deanna became, and will always be, Landon’s fierce advocate, also dedicating herself to encouraging and guiding other families to do the same for their children.
This life may not be what we originally envisioned, but it is the life we now choose to daily make the biggest and brightest, despite the broken pieces. The remarkable thing is, those broken pieces continue to mend and, over time, become even more beautiful. This journey forces you to see each day as a blessing and ignites a deep desire to help other families find their way to this place – to their own version of a broken, beautiful, unimaginable, and purpose-filled life.
We long for people in our community to see our children as we see them: children who persevere against all odds, who laugh at the little things, and who choose joy despite their disabilities.
We searched for a space where families facing neuromuscular disabilities could come together, build relationships, and support one another through shared experiences. When we found nothing like it in our community, we decided to create that space ourselves.
And so, Helix 45 was born.
A space where families can be present, authentic, and understood. A place where they can be encouraged to keep moving forward, together. Because together, we are stronger.
Take the first step to becoming an official Helix Hero!
If you have a child aged 0-25 with a neuromuscular disability, we warmly invite your family to find your place in our Helix Heroes community and attend our supportive events. We'd love to welcome your family.