When Alisha Morris first held her baby girl Esmay, she never imagined she’d one day be grieving the life her daughter should have had — while Esmay was still alive.
The joyful little girl from Devon, England, once loved sliding at the park, dancing to music, and lighting up the room with her giggles.
But by age 2, her mother and grandmother began noticing something wasn’t right.
Esmay had stopped enjoying her favorite things, and she was constantly sick with colds that wouldn’t go away.
The heartbreaking news
Then came the heartbreaking signs: hair falling out in clumps. Loss of speech. No longer recognizing her loved ones.
“We noticed she didn’t like doing the things she used to like doing like going down the slide at the park and dancing to music,” Esmay’s grandmother, Sabrina Peake, told Daily Mail. “She would pick up bugs and colds and would be ill for weeks at a time—we knew something was wrong.”
Doctors originally thought it was an autoimmune disease and overactive thyroid.
But then came the devastating diagnosis: Esmay had Sanfilippo Syndrome (MPS IIIA), a rare genetic condition sometimes called “childhood dementia.” It causes rapid cognitive decline, memory loss, personality changes, and ultimately, is life-limiting. Children with the condition typically don’t live past their teens.
1 in every 70,000 births
According to the Cure Sanfilippo Foundation, the condition causes children to lose all the skills they’ve gained and it’s estimated that Sanfilippo Syndrome affects 1 in every 70,000 births.
Most families start noticing something isn’t right between the ages of 1 and 6 —when their child stops hitting milestones, or begins to fall behind. What once felt like typical childhood suddenly turns into a heartbreaking journey of delays, confusion, and worry.
“Esmay doesn’t know much about it as she’s in her own little world most the time, but it’s been incredibly tough for us,” Sabrina said. “She can barely walk and she can’t talk, and she has no awareness and doesn’t interact with anyone. I don’t think she always knows who we are.”
Now, the family is facing the unimaginable — watching their 5-year-old daughter fade away before their eyes.
“She is now the healthiest she’ll be,” Sabrina added. “She’ll get worse every day until her body totally gives up on her.”
With no cure for Sanfilippo Syndrome, Alisha and her loved ones are doing what they can: focusing on making every single day count.
They’ve set up a GoFundMe to help purchase the specialized equipment Esmay will soon need—and to help create joyful moments while they still can.
“She may not remember us one day,” said Alisha, “but we’ll remember her smile forever.”
💜 To support Esmay and her family, you can visit their GoFundMe page here. Every share and donation brings them one step closer to precious memories they’ll cherish forever.
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