At just five years old, Esmay Ford from Devon, UK, is facing a life no child should ever have to. Diagnosed with Sanfilippo Syndrome (MPS IIIA)—a rare and fatal genetic disorder often called “childhood dementia”—Esmay’s condition is already robbing her of speech, mobility, and recognition of her loved ones.
👶 From a Joyful Toddler to a Struggling Fighter
Esmay’s early years were filled with giggles, dancing, and park adventures. Her mum, Alisha Morris, recalls those days as blissful and full of life. But in 2021, when Esmay was just two and a half, subtle changes started to emerge.
Esme’s mother and grandmother noticed small changes in the toddler (SWNS)
“She didn’t want to go down the slide anymore. She stopped dancing,” shares Sabrina Peake, Esmay’s grandmother. “She was constantly sick, and her hair started falling out. We knew something was seriously wrong.”
Their persistence led to blood tests and an initial diagnosis of an autoimmune condition and an overactive thyroid. But soon after, doctors confirmed the devastating truth—Sanfilippo Syndrome.
🧠 What is Sanfilippo Syndrome?
Sanfilippo Syndrome is a rare inherited metabolic disorder that causes severe brain damage over time. Children with this disease experience progressive memory loss, behavioral changes, and eventually lose basic abilities like walking and talking. Learn more from Great Ormond Street Hospital.
Life expectancy for children with this condition is tragically short—typically between 10 to 18 years.
💪 A Family’s Mission: Love, Memories, and Support
Despite the heartbreak, Esmay’s family is doing all they can to give her a joyful and comfortable life. “She can’t talk or walk now and rarely recognizes us,” Sabrina explains. “But she still smiles sometimes, and we treasure those moments.”
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The family are now determined to make as many memories as possible(SWNS)
The family are now determined to make as many memories as possible(SWNS)
To help manage her condition, the family is raising funds through a GoFundMe campaign to buy essential equipment and plan memory-making adventures while they still can.
🌟 How You Can Help
You can support Esmay’s journey by donating, sharing her story, or simply spreading awareness about Sanfilippo Syndrome. Visit the MPS Society UK to learn more about the condition and how to support affected families.
💬 Final Thoughts
Esmay’s story is a powerful reminder of how fragile yet beautiful life can be. Her family’s courage in the face of unimaginable odds is nothing short of inspiring. If you’re looking to make a difference, even a small act of kindness can help children like Esmay experience joy in the time they have.
