What was supposed to be the joy of watching a little girl grow up has turned into a heartbreaking countdown for a family in Devon.
Five-year-old Esmay Ford once loved playing outside, dancing to music, and chatting like any happy toddler.
But all of that changed when her family noticed something wasn’t quite right.
Now diagnosed with a rare form of childhood dementia known as Sanfilippo Syndrome, Esmay’s family is trying to pack a lifetime of love, comfort, and memories into the years she has left.
From Joy to Worry: When Everything Changed
Esmay’s early years were full of smiles.
Born in August 2019, she seemed healthy and hit all the usual milestones.
But by the time she was just two and a half, her mum, Alisha Morris, and grandmother, Sabrina Peake, began to worry.
She stopped talking. She got sick more often.
And then came the shocker—her hair began falling out in clumps.
“She didn’t want to dance anymore.
She didn’t enjoy the playground like she used to,” Sabrina recalled. “It was like she was slowly slipping away.”
A Long Search for Answers
At first, doctors thought Esmay had an autoimmune condition and an overactive thyroid.
Her family clung to the hope that treatment might help.
But when her development didn’t improve, they pushed for more tests.
Finally, in May 2025, the family got the diagnosis they feared: Sanfilippo Syndrome, also called MPS IIIA—a degenerative condition often nicknamed “childhood Alzheimer’s.”
Living With ‘Childhood Alzheimer’s’
Sanfilippo robs children of their memories, motor skills, and personalities over time.
For Esmay, it’s already taken a lot.
She now needs help with everything—she can’t walk properly, she no longer speaks, and often doesn’t recognize her loved ones.
“She lives in her own little world now,” Sabrina shared.
“We know this is the healthiest she will ever be again. Every day could bring a new decline.”
Preparing for the Difficult Road Ahead
Doctors have warned that Esmay’s condition will keep worsening.
Her mobility and cognitive skills will deteriorate.
Her life expectancy? Likely somewhere between the ages of 10 and 18.
The reality is sobering for Alisha, a 24-year-old mum, and for Sabrina, who describes herself as a very hands-on grandmother.
“Our biggest fear isn’t just losing her,” said Sabrina. “It’s having to watch her suffer.”
Fighting for Comfort and Memories
The family has now launched a GoFundMe campaign to raise money—not just for vital equipment like a modified bed and buggy—but also for the chance to make beautiful memories while they still can.
They hope to take Esmay to Disneyland. But time is of the essence.
“This is the healthiest she’ll be,” Sabrina said.
“So we’d love to go as soon as possible.”
The Emotional Toll on Loved Ones
Sabrina spoke with raw honesty about what it’s like to watch her granddaughter fade.
“I would give anything to hear her laugh or talk again,” she said.
“Knowing I’ll never hear her little voice again is so hard to accept.”
Despite everything, she’s incredibly proud of how the family is coping—especially Esmay’s mum, who is facing the unimaginable with strength.
What Is Sanfilippo Syndrome?
Sanfilippo Syndrome (MPS IIIA) is a rare genetic disorder affecting about 1 in 70,000 births.
Children with the condition are missing an enzyme necessary for breaking down certain sugars.
That leads to a build-up of toxic material in the brain, resulting in cognitive and physical decline.
There’s no known cure, but clinical trials are ongoing in hopes of finding treatment.
How You Can Help
As the family faces this emotional and financial challenge, they’re relying on the kindness of others.
Donations to their GoFundMe will help make Esmay’s remaining years as joyful and comfortable as possible.
Their wish is simple: to give this brave little girl the best life they can—while they still have the chance.