Elouise’s Story: Bravery in the Face of H-ABC
A journey of strength, love, and the fight for answers.
A Life- Changing Diagnosis
Elouise was born in 2005—a joyful baby with a bright smile and curious spirit. But by around 2008, when she was three years old, her parents began to notice subtle physical differences. She wasn’t meeting milestones like her peers, and there were growing concerns about her balance and muscle tone.
What followed were years of uncertainty—countless doctor visits, therapies, and tests. Her parents knew something wasn’t right, but answers remained painfully out of reach. Between hospital visits and referrals, their lives became a whirlwind of hope, worry, and waiting.
Finally, in 2013, when Elouise was eight years old, they received the diagnosis: Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum (H-ABC)—a rare and progressive disorder caused by a mutation in the TUBB4A gene. It was an answer, but also the beginning of a very different journey.
With no roadmap and little research to guide them, her family refused to stand still. In 2015, they established the Foundation to Fight H-ABC, determined to raise awareness, support other families, and accelerate the path to a cure.
“We felt powerless for so long—but building the Foundation gave us purpose.
It was a way to turn pain into progress.”
— Elouise’s dad Britt
Before Her Diagnosis
In the months leading up to her diagnosis, Elouise was like any other toddler—curious, lively, and full of energy. Her story begins not with a medical chart, but with the joy and hope of a family watching their little girl grow.
A Bright Light
Elouise was a vibrant, joyful little girl whose laughter filled every room. She loved music, playing with her older sister, and snuggling with her favorite stuffed animal. Her curiosity knew no bounds, and her smile had a way of making even the hardest days feel hopeful.
Like any child her age, Elouise was hitting milestones, learning new words, and discovering her world one small wonder at a time. Her family cherished every moment—never imagining how quickly things would change.
“She brings so much light into our lives. Every moment with her is a gift.” — Elouise’s mom Michele
Elouise - A flower girl - before her diagnosis
Elouise’s Journey with H-ABC
Diagnosed with H-ABC—a rare and progressive neurological disorder—Elouise’s life, and her family’s, changed forever.
Over time, she began to lose abilities many of us take for granted. First, she lost the ability to walk. Then to speak. Eventually, she could no longer sit up without support.
There is no cure. And the uncertainty is heartbreaking.
Yet through it all, Elouise is almost always happy—her bright smile lighting up every room.
Today, her condition has progressed significantly. She uses a wheelchair full-time. She experiences dystonia—painful, uncontrollable muscle contractions that twist her limbs and neck.
She’s undergone spinal fusion surgery, a partial hip correction, and now relies on a feeding tube for safe nutrition.
“She’s been through so much, and yet she still finds reasons to smile. Elouise teaches us every day what resilience and joy truly mean.”
— Elouise’s dad Britt
Today
Now 19 years old, Elouise continues to face the daily challenges of living with H-ABC. Her condition remains complex and demanding—requiring full-time care, adaptive equipment, and ongoing medical support.
Despite it all, Elouise's joy shines through. She laughs at silly jokes, cheers for her favorite team—the Kansas City Chiefs—and lights up when surrounded by family and friends.
Her strength and spirit continue to inspire not just her family, but the entire H-ABC community that has rallied around her.
Her parents believe her life holds deep meaning, even if it doesn’t look like everyone else’s.
She’s still their Elouise: funny, brave, and full of light.
Support Kids Like Elouise
There is no cure yet for H-ABC—but with your help, we can change the future.
By supporting the Foundation to Fight H-ABC/TUBB4A, you help:
Fund essential research toward treatments and one day, a cure
Connect families to critical resources, specialists, and support networks
Raise awareness of this devastating and rare neurological disorder
Together, we can give every child living with H-ABC and other TUBB4A-related leukodystrophies a fighting chance—and let families like Elouise’s know they’re not alone.