It is time for a brief reflection on our journey over the last year and a half with a wonderful family and the young man, Jeremiah, whom the Documenting Hope (DH) team has fondly come to know as Jay. Jay joined the DH FLIGHT™ Study after having lived with the condition known as Alopecia universalis for over half his young life.
By the age of 3, Jay sported a full head of hair and typical hair growth on the rest of his body just like his siblings, but in a matter of weeks, all Jay’s hair went away. Jay’s family joined the FLIGHT™ Study when Jay was 7 to shed light on the details of their son’s condition and to better support his overall health.
By the time Jay exited the 18-month-long FLIGHT™ Study, he was showing signs of very fine hair returning to his head, especially eyebrows and eyelashes, illustrated through close-up pictures shared by his mom. While many of us are hopeful that the reversal trend continues, Jay’s “success” doesn’t necessarily lie in the return of his hair. In fact, he and some of his teammates have grown to admire this look, and it clearly hasn’t stopped him from pursuing his love of sports like hockey, where he continues to excel.
Change comes with age yet change for the better in the health and well-being of Jay and other children with chronic conditions doesn’t always come easily or in obvious ways. Those of us who work with families who manifest positive change, are inspired; you give purpose to our work!
Jay’s family deserves a great deal of credit for courageously stepping into the limelight to let us document his story as it unfolded, not knowing what might transpire along the way. Jay courageously stepped up too, enduring blood draws and other specimen collections, film shoots and interviews, and a whole host of visits to specialists that required his patience and active engagement.
Jay and his family’s cooperation meant so much to the DH Team. It allowed us to place a large magnifying glass over their home, Jay’s day-to-day life experiences, and the inner workings of his body – it was an extensive exploration of the role and functions of his outer and inner worlds. Meanwhile, Jay continued the types of childhood activities one would wish for their own child: going to school, hanging out with friends, playing in the park, and pursuing his unique talents in athletics and beyond.
Here is a quick peek into some of the changes we saw on Jay’s outside and inside worlds that remind us why we do the research we do, and why more is needed, and how we might do it better to help more kids get better results on the journey to reversing their diagnosis.
- Many children have visual challenges that go unnoticed – smart children find workarounds and/or do tasks inefficiently or avoid activities they might otherwise enjoy, like reading. Jay may be one of those kids. He always enjoyed story time, but not reading. Was it due to his previously undetected dyslexia? The verdict is still out.
- Jay was notoriously tough to get going in the morning. His dad, tasked with the wake-up routine, would have to confront an unhappy, resistant child. Once it was discovered that Jay’s bedroom held an excessive amount of voltage in the vicinity of the head of his bed and it was addressed, a “new child” appeared – a positive, happy, and compliant, seemingly well-rested son. Incidentally, and perhaps coincidentally, Jay’s move into that room corresponded with his hair loss.
- Just like many kids today, Jay was a picky eater; therefore, his diet wasn’t very diverse. Since we have known him, Jay’s palate has diversified, most notably to include an array of vegetables. We might attribute this in part to his bio-individualized supplements known to restore a healthy microbiome and his mother’s diligence – cutting out foods that Jay showed sensitivity to on his blood work and creatively working in healthier, less processed, organic versions. This style was reinforced by a wonderful chef that came to Jay’s home to teach us all.
- In modern medical terms, Jay’s alopecia is an autoimmune condition. Jay’s team was excited to see a marked decrease in his cytokine profile over the course of the study – suggesting that his immune system is in a much less defensive posture than before. However, we still see signs of oxidative stress that could use more support.
- While Jay wrestled with certain supplements (resisting pills and certain flavors or textures), he has always been diligent at consuming vitamin C (which should be one of the things helping to lower his oxidative stress), but his last lab work still suggests a shortage and a need for more. Could he be using more than he’s consuming?
- Although the family remediated some mold in and near Jay’s room, biomarkers indicate an ongoing presence in his body. The good news: His body is excreting them. The remaining question is, “Why are they still there?” Modern medicine is shedding light on a myriad of adverse health implications for mold exposure.
- Jay’s journey has given the DH Team and its supporters more insight into the potential benefits of working with specialists who understand and support the nuanced connections between anatomy and physiology, the interplay between structure and function. We gained insights into Jay’s vision through a developmental optometrist and into his airway through dentists that specialize in this. We also learned more about the importance of a brain’s rhythms and the integration of reflexes and more – each area having an impact on other bodily systems, including mental health.
- The FLIGHT™ Study was designed to look through many lenses for patterns that help identify what might be contributing to the burden of a child’s body or contribute to dysregulation in some way. In Jay’s case we did see a variety of metals – again, we’re glad his body is able to excrete them even though he lacks hair at this time to use as either a measure or excretion pathway – which begs more questions, “How much is too much? How can we lower the load further? How is testing evolving or becoming more affordable, accessible, or accurate to help more children like Jay?”
- Jay’s family plans to keep addressing their household’s needs and Jay’s individual needs – continuing to supplement with vitamin C and other nutrients based on improvements, shortfalls, and even insights from Jay’s genomic testing. They have access to all his results and see the trends and can share his story with others.
- Through the FLIGHT™ Study Jay’s family has enjoyed access to cleaner water, air, and other supports in their home, including low-level-light therapy, which Jay seems to really enjoy. They are encouraged to keep Jay involved in outdoor activities (wearing a cap in the sun to protect new hair growth) and assuring music stays in his life too!
Although Jay’s primary engagement with the FLIGHT™ Study has come to an end, we hope that the lessons his family has learned and the lessons he and other children continue to teach us ripple forward. Jay’s parents are aware of many new resources to help them navigate their children’s bioindividual journeys. They also recognize the value of lowering a body’s total load while supporting both its function and structure.
The Documenting Hope team plans to continue to unpack Jay’s real-life data and to use the CHIRP™ Survey and the FLIGHT™ Study to evolve our scientific understanding of what might help all kids thrive. Stay tuned as we plan to update you soon on FLIGHT™ 2.0: 12 more families to come!
