Documenting a Rare Disease Journey | by Ashley Maple
My name is Ashley Maple, and I am a hobbyist photographer living in East Tennessee. When our fourth child Archer was born in 2010, my family began a devastating rare disease journey that continues to this day. After an excruciating year of testing following some concerning vision symptoms, Archer was diagnosed at 18 months old with a peroxisome biogenesis disorder. Peroxisomal disorders are rare, genetic conditions that cause deafness, blindness, global developmental delays, adrenal insufficiency, neurological issues, and feeding issues, and are almost always terminal in childhood. Understandably, our lives completely changed upon receiving this heartbreaking news.
Before we knew of Archer’s disease, and around his first birthday, I purchased a used Canon Rebel so that I could (hopefully) take better photos of our family. I read everything I could and learned to shoot in manual. I didn’t know it then, or realize for many years afterward, but photography was a therapeutic tool for me as I have been able to tell our family’s story through it. Photography helps me appreciate the moment as it is, and to keep seeing the beauty in our lives, especially through difficult times.
Documenting with Gratitude
Unable to walk due to his low muscle tone and poor balance, Archer was an extremely fast butt-scooter; leaning forward on his hands and then backward on his bottom while propelling himself forward to get to where he needed to go. Finally, at age 3 ½, Archer’s tenacious spirit prevailed, and he began walking independently, although not without instability and frequent falls. Now at 14 years old, he has experienced significant mobility loss the past few years. He will crawl or needs his walker, because he cannot trust his ability to walk. This has been the most heartbreaking aspect of his peroxisomal disorder since he desperately wants to explore his world.
When I was reviewing photos from years ago for this post, it really hit me hard to realize how much stability Archer used to have. When he was younger, he didn’t need me to be in arm’s reach to ensure his safety. It is excruciating to realize the degree of skill and freedom he’s lost, and I can easily get lost in worrying about how much more he will lose. I remind myself to look at past photos with gratitude that he could even do those things in the first place. The degree of mobility he achieved was a gift that he used to the fullest.
Documenting the Everyday
As a homeschooling mother for nearly 20 years, and caregiver to a child with a rare disease, my life has always been closely tied to home and the practical activities of daily living and raising a family. I look back on the early photos, when my children were young, that captured everyday moments with such tenderness. Visits to the park, homeschool trips, a room filled with moving boxes, haircuts, bike rides, snuggles with pets, a child’s handwritten note, blanket forts, playing in the driveway, playing in a kitchen cabinet, a laundry pile, reading books at the library… The story of my family was being written in those moments, and I feel the weight of their value now that three of those children are nearly grown. It encourages me to remember that small moments string together, weave, and build on each other to become something bigger. Individually, the everyday moments appear somewhat ordinary, but together they narrate the extraordinary story of my family through my lens.
Even now that Archer is 14, I still really cherish documenting real-life moments. From a practical standpoint, these come easily because they are unscripted moments that are unfolding. I have tried asking him to do certain things like sit here in the pretty light or hold a Valentine’s Day balloon, etc., and usually, he lets me know in no uncertain terms that he has other plans. This leads to us both being frustrated. Since I don’t want photography to become one more exhausting struggle, I have learned to accept that the photo I am able to take is the one I am meant to, flaws and all. I don’t have to tell our story perfectly; I just have to tell it as it is. Being a constant caregiver doesn’t leave a lot of extra energy for creativity, and I’ve learned to be accepting of this as an aspect of documenting our every day.
Documenting Relationships
I find contentment in photographing the relationships within our family; snuggles on the couch, walking side by side, holding hands, cuddling a beloved pet, etc. I always try to capture authentic connections that show the bonds we have with each other. Often it involves physical contact like an embrace, which is emotionally powerful, but the relationship can also be less obvious where the viewer is left to infer a deeper bond between the subjects, such as just a giggle shared between sisters. I think capturing these connections is so powerful because as human beings we have an innate desire to be in a relationship with each other. Through human nature, we can intuit the emotions of the subjects by observing these relationships. We can imagine the pain, joy, or any other feeling, of another’s experience. I think this is what makes photography especially powerful in conveying the emotional impact of relationships that we can relate to.
Documenting an Enduring Spirit
Despite multiple surgeries, falls, ER visits, doctor’s appointments, physical challenges, and loss of abilities, the one thing that has remained the same is Archer’s smile and vibrant joy. That is another thing I was reminded of reviewing photos of his younger days; he has always exuded happiness with an infectious smile and laugh. I can hear his laughter just by looking at a photo. He continues to spread cheerfulness to everyone around him, and he is always making us laugh. Despite disease progression, I can say his spirit has not changed, and I am incredibly grateful for this too.
A Note on Community and Connection
The path of a rare disease is often lonely and isolating. We were incredibly fortunate to connect with an organization called the Global Foundation for Peroxisomal Disorders (The GFPD) during Archer’s diagnostic journey. This organization gave us a community of families who were facing the same heartbreak that we were. We met others who were following a similar rare disease journey, and who were an incredible source of comfort and support for us early on. We have been connected with this organization for over thirteen years now, and we can attest that being in a community with others who understand our experience is profoundly important. Connecting with the community is a powerful antidote to isolation.
Due to overwhelming life circumstances and my camera needing an expensive repair, I drifted away from regularly picking it up a few years ago. After finally getting it repaired, I wanted to get back into documenting our lives, and I stumbled upon the welcoming community at The Framed Focus. Just as in finding connection within our rare disease community, the support of this amazing photography group has encouraged and inspired me to learn again. I am currently participating in Angie Mahlke’s 52 Clicks; a weekly photography project with a year’s worth of prompts, guidance, and community support. It has been challenging for me personally, as Archer requires a great deal of care and I struggle with caregiver burnout, but gratifying to continue to document our family’s story once again. The Frame Focus community truly encourages one another, and I feel accepted where I’m at on my journey. I hope that everyone can find encouragement, inspiration, and support within communities like these.
If you are going through a difficult time, or simply wish to capture the everyday, transient moments of your life, I hope you’ll discover how impactful and healing documenting your story can be. Like me, you might just look back and see there was value in the mundane, beauty in the pain, and precious relationships that held it all together. Through sharing your story, may you find community and inspiration in connecting with others who understand and support you. Whether you choose to document your journey by taking photos, journaling, or other means….your story matters, and only you can tell it.
