Hope With Lo: A Rare Journey of Courage, Care and Community

Written by: mejo

At mejo, we have the honor of supporting extraordinary families navigating some of the most complex and challenging medical journeys. Today, we’re proud to share the story of Lola, a radiant 5-year-old girl living with Zellweger Spectrum Disorder , a rare and life-limiting genetic condition that touches nearly every part of her body.

Lovingly known as “Lo,” Lola was diagnosed just before her first birthday. That moment changed everything for her family. Blind, deaf (she wears cochlear implants), and unable to walk or talk, Lola also faces serious complications with her liver, kidneys, bones, and muscles. She requires full-time care, round-the-clock oversight, and a carefully managed medical plan. And yet, despite it all, Lola is joy personified. Her smile is pure magic. Her presence, powerful. Her spirit, unshakeable. To meet Lola is to be changed by her gentleness, her strength, and the quiet light she brings into the world.

Sara’s Journey: The Beautiful Complexity of Parenting a Medically Complex Child

Lola’s mom, Sara, describes it best:

“Being a parent to a medically complex child is the most difficult and most beautiful thing I’ve ever done.”

There is no sugarcoating the reality; it is physically exhausting, emotionally overwhelming, and relentlessly complicated. From the constant stream of medical appointments and therapies to advocating within systems not designed for children like Lola, every day brings its own set of challenges. It means grieving the life you once imagined, while simultaneously finding beauty in the life you’ve been given.

Sara and her family have had to adapt every part of their world. They’ve retrofitted their home for accessibility, learned alternative communication methods, and built an ever-growing care team of specialists. But amid all the hard, there is an equally profound love. They've discovered strength they didn’t know they had and found community with other families walking similar paths. And they've learned to treasure the smallest milestones — a soft smile, a new sound, a few extra minutes of comfort.

A Day in Lola’s World

No two days look exactly alike, but each one is centered around meeting Lola’s needs with love and intention. Mornings begin early with a series of medications and routines to get her ready for the day, dressing, hygiene, and breakfast. Lola eats by mouth, but every bite requires hands-on support and careful supervision, making mealtimes a slow and purposeful process.

The day may include physical or occupational therapy sessions at school or home, check-ins with her medical team, or time spent simply helping her feel safe and stimulated. Sensory play, music, movement, touch, and light, each is used with intention to bring Lola joy and help her experience the world around her.

Evenings bring another round of meds and supplements, a calming routine to help her wind down, and often unexpected issues that come with caring for a medically fragile child. Nights require constant monitoring to ensure she’s safe and comfortable. It’s a 24/7 labor of love. One that is physically demanding and emotionally intense, but also deeply meaningful.

As Sara puts it, “Lola teaches us every day what it means to be brave.”

How mejo Helps Make Life a Bit Easier

Amid all of this complexity, Sara and her family have found support in mejo. With so much to manage — appointments, symptoms, care summaries, medications, equipment — mejo helps them feel more in control and better prepared.

“mejo has truly helped us feel more organized and supported in Lola’s care,” Sara says. “We track her meds, document changes, and have her care summary right at our fingertips — which is incredibly helpful during appointments or in the rare (but always stressful) emergency situations.”

One moment that stands out came during a school meeting: “I was able to clearly share Lola’s full medical picture using her mejo profile. Instead of printing endless pages or trying to remember everything, it was all in one place — accurate and accessible.”

Sara also uses mejo to store essential documents related to Lola’s specialists, therapies, insurance, and school plans. It saves time, reduces stress, and creates space to focus on what matters most. Her favorite feature? The Care Summary — a snapshot of Lola’s complex needs that she can share instantly with new care providers, school staff, or therapists.

“With Lola starting Kindergarten this fall, and a whole new therapy team, mejo is going to be more helpful than ever.”

Hope With Lo: Turning Pain Into Purpose

Lola’s story doesn’t end with her diagnosis — it’s just the beginning of a mission to support others. Sara and her family created Hope With Lo, a nonprofit dedicated to raising awareness and funds for Zellweger Spectrum Disorder research. It’s a labor of love, born from their desire to honor Lola and make the road a little smoother for families who come next.

To the Families on This Path: You Are Not Alone

Sara offers this to others walking similar roads: “This life is heavy and full of unknowns, but it’s also filled with deep love, fierce community, and moments that will change you for the better.”

At mejo, we’re grateful to walk alongside families like Sara’s — families who show us what courage, connection, and unconditional love really look like.

You can learn more and get involved at hopewithlo.com, or find the family on TikTok and Facebook. Their presence is raw, real, and full of heart.