OUR STORY
The Foundation to Fight H-ABC/TUBB4A
was co-founded by the parents of Elouise who was diagnosed with H-ABC in 2013
Read below about Elouise’s Journey with H-ABC and how her family is helping advance research.
A Parent’s Worst Nightmare!
In 2015, Michele and Britt Sloan founded the Foundation to Fight H-ABC/TUBB4A after receiving the most devastating news a parent can hear: their young daughter Elouise had been diagnosed with H-ABC, a rare, degenerative brain disease with no known cure.
What began as concern over a strange movement in her arm spiraled into a heartbreaking diagnosis. H-ABC slowly robs children of everything—movement, speech, independence—and leaves families with nothing but questions, grief, and the fierce need to fight back.
What is H-ABC?
H-ABC is a severe form of leukodystrophy, a group of more than 50 rare genetic diseases that damage the brain’s white matter by disrupting the myelin sheath—a protective layer that helps nerve cells communicate.
Without healthy myelin, a child’s development can stall and then regress. Over time, motor skills, balance, speech, and even basic bodily functions begin to fade.
Elouise’s Early Childhood - The First Signs Something Was Wrong
Born in 2005, Elouise was a joyful, curious child. She walked early, ran freely, played with her older sister and cousins, and lit up every room. She was thriving.
Then, around age three, her parents noticed something small—but unusual. She started pulling her right arm up when she ran. Concern turned to fear when doctors found delayed brain development. An MRI revealed an undersized cerebellum and delayed myelination. More tests followed.
Finally, the diagnosis came: Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum (H-ABC).
A Cruel Diagnosis No Parent Should Hear
The news shattered their world. Doctors explained that Elouise would gradually lose the very skills she had once mastered—walking, eating, even speaking. There was no known cure. No treatment plan. Just a slow and painful progression.
It was every parent’s worst nightmare.
Life Today
Now a teenager, Elouise’s condition has significantly worsened.
She is wheelchair-bound. She cannot walk, stand, bathe, eat, or get dressed on her own. Her speech has become difficult to understand, making it hard to communicate even basic needs.
She suffers from dystonia—uncontrollable, painful muscle contractions that twist her limbs and neck. Her parents watch, powerless, as their daughter fights through relentless pain.
Botox injections and muscle relaxants help temporarily, but their effectiveness is fading. Elouise has endured spinal fusion surgery, a partial hip correction, and now has a feeding tube to help her eat safely. Swallowing had become dangerous—choking was a constant fear.
This is Why We Fight
Michele and Britt refused to let despair win. They founded the Foundation to Fight H-ABC not only for Elouise—but for every family facing this terrifying diagnosis.
They are committed to raising awareness, advancing research, and connecting parents who are navigating the same devastating journey. Their hope is not just survival—it’s a future with treatments, answers, and eventually, a cure.
Give Hope Today - Your Donation Makes a Difference
We are not giving up—and we need your help.
Every donation supports research that could change lives. Every share spreads awareness to families searching for hope. Every action gets us closer to a cure.
Join us in this fight for Elouise, and for every child living with H-ABC.