Not Me, Not Today: Harper’s Power in Defying Limits

“Not me, not today,” Harper declares, brushing off the stares of someone much older than her ten years. Her confidence shines, a refusal to let the world decide how she should feel about herself. Her mom, Angie, watches behind her, looking on. She still remembers the version of herself who was too shy to speak up in crowds, the one who never imagined herself to be an advocate with over 52,000 followers. But having Harper changed everything. “I had to use my voice,” she says, “because she didn’t have hers yet.” Together, they’re rewriting what it means to live with Harlequin Ichthyosis (HI), a rare genetic disorder that results in red, hardened, and dry, scaly skin covering the body. This makes it essential for her to take multiple hour-long showers to avoid dryness and discomfort. Harper’s daily showers help her feel comfortable moving around as she juggles her seasonal extracurriculars, which include soccer, basketball, flag football, and Bible school. As her primary caregiver, Angie cherishes every moment with Harper and takes nothing for granted when it comes to the quality time they share. “People don’t realize the little things,” Angie explains. Something as ordinary as a shower takes time and energy. Without it, the sports that Harper loves would be impossible. “When Harper was born, she was told, most likely, she will never play sports,” Angie explains. “But look at her now.” HI not only takes a toll on the body, but it takes a toll on families financially. Angie mentions that she has to get new clothes for Harper regularly since the garments become unwearable after just a few days due to the permanent stains of the skincare products. “It’s not all peaches and cream over here,” Angie explains. Taking care of a child with special needs is not easy. It is constant and consuming, and often invisible to the outside world. There are medical appointments, countless supplies, and a mental checklist that is never-ending. For Angie, that includes managing Harper’s skincare, planning each outing around access to hygiene, and advocating for Harper in every space she enters. “You live it day by day,” she says, not aiming for perfection, but rather showing up every morning and facing any challenge together. Her social media presence has led to brands such as Aquaphor to send her parcels of their products to help Harper in her daily shower routine. Every other day, a $16 jar of Aquaphor is used up fast. Unfortunately, insurance rarely covers these seemingly small but essential items. Like Angie, the HI community struggles to keep up with these costly supplies. In fact, Angie receives messages from around the world asking for donations on some of the supplies she receives, but it’s impossible for one person to do it all. Angie believes there is real potential for companies to step up and support communities globally. If only the need were brought to their attention. That’s part of their mission now: to use her social media presence to advocate for HI and spread awareness for those who need it the most. Harper's social media platform began with her first modeling contract with TCM Models & Talent in Seattle. After Angie submitted some photos, the agency immediately fell in love with Harper’s personality and spirit, signing her on their first day! Harper's popularity led to her being featured on TV, People Magazine, the Today Show, and even on the New York Fashion Week runway, “it was awesome!” Harper exclaims. Inspired by Harper's new modeling career, Angie created an Instagram account for Harper (@harper.incredible) in 2018, based on the abbreviation HI for Harlequin Ichthyosis. The account is dedicated to positivity, featuring quotes and reels centered around uplifting others. Their focus is on changing the narrative around HI and sharing their stories with others worldwide. When Harper was first diagnosed, Angie recalls feeling like she was “in a fog,” struggling to find resources about Harper’s diagnosis. While she noticed some change since the beginning of her journey as a caregiver, she has seen no significant increase in resources, recalling that she wishes more information were out there. “[I hope] it will change over the years,” she states. Angie has found support through a mom’s Ichthyosis Facebook group and the Ichthyosis Foundation, and hopes that through Harper's social media presence, they can raise awareness and help others find effective routines for managing HI. To further channel their message, Angie teamed up with a graphic designer friend to launch an online store featuring Harper's iconic quote, “Not me, not today,”. All proceeds go directly to Seattle Children's Hospital to support other families in need. For Angie and Harper, life isn’t about grand plans or overnight change. It is a commitment to taking life one step at a time. Angie is grateful for Harper, who has helped her empower others with her new mindset; “[I] had to be her voice to share our story,” Angie expresses. They never anticipated their platform would grow as it has, but if their journey can inspire even one person to feel seen, supported, or even a little less alone, then it has all been worth it.