A five-year-old suffers from a disorder that will take her life before she even becomes an adult. Esmay Ford’s family was devastated when they found out that she suffered from “childhood Alzheimer’s.”
The toddler’s family found out that she suffers from Sanfilippo Syndrome (MPS IIIA) on May 15. The rare disorder is a type of childhood dementia. The disorder results in the life of the patient being limited. The people suffering from the disorder also suffer from memory loss and personality loss.
The toddler’s mother and grandmother were the ones to notice the first sign of the disease. Alisha Morris, the mother, recalled how back in 2021, her “healthy” daughter abruptly stopped talking. Esmay also kept “catching colds” on a frequent basis.
The doctor’s initial assessments told the family that the toddler had an autoimmune disease as well as an overly active thyroid. These factors made the growth of Essmay’s brain halt. Her family still “hoped and prayed” that the medication she was prescribed would turn things around.
The initial diagnosis prompted several tests that revealed that the toddler had MPS IIIA. The disease is also known as “childhood Alzheimer’s” and affects the brain and nervous system of an individual. The disorder will let Esmay live only until she turns 18 years old in the best-case scenario. The toddler will manage to live until “her body completely gives up on her.”
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This Friday is Rare Disease Day.
In the United States a disease is categorized as rare when it affects less than 200,000 individuals. It is estimated that fewer than 5,000 individuals in the U.S. have Sanfilippo Syndrome. Unfortunately, the more rare a… pic.twitter.com/VqXPAsXJKx
— Brutus Stark (@iron_brutus) February 24, 2025
The life expectancy of children with the disorder is 10 to 18 years. Esmay, who is 5 years old, has already forgotten her family. She also has to be constantly supervised by someone because she has “no awareness of danger.”
Esmay’s grandmother, Sabrina, notes how they knew something was wrong when the toddler stopped talking and big clumps of her hair started falling out. “Esmay doesn’t know much about it as she’s in her own little world most of the time,” she noted. Sabrina also shared how “incredibly tough” it has been for the family to come to terms with what is happening.
The 5-year-old’s grandmother talks about how Esmay can “barely walk” anymore. “I don’t think she always knows who we are,” Sabrina notes. The toddler’s grandparent is also fully aware of how her grandchild’s health will “get worse every day until her body totally gives up on her.” She also reveals that Esmay used to be a pretty lively and happy child until she was two and a half years old. The family is now attempting to raise money to help create memories for the toddler in the limited time she has.
Esmay’s family wants to take her to Disney and buy vital equipment with the money raised. “We’ve had to come to terms with the fact that we will lose her, and that things will be extremely tough going forward as she gets worse,” the grandmother noted. She also shares how the family’s biggest fear is seeing Esmay suffer.
