When Alisha Morris first held her baby child, Esmay, she had no idea she’d one day be mourning the life her daughter should have had—while she was still alive. The joyous little girl from Devon, England, used to enjoy sliding in the park, dancing to music, and lighting up the room with her smiles. However, at the age of two, her mother and grandma saw that something was wrong. Esmay had ceased enjoying her favorite activities, and she was often ill with colds that refused to go away.
Heartbreaking news
Then followed the devastating signs: chunks of hair fell out. Loss of speech. She no longer recognizes her loved ones.
“We noticed she didn’t like doing the things she used to like, like going down the slide at the park and dancing to music,” Esmay’s grandma, Sabrina Peake, told the Daily Mail. “She would pick up bugs and colds and would be ill for weeks at a time—we knew something was wrong.”
Doctors first diagnosed it as an autoimmune condition and an overactive thyroid.
But then came the awful diagnosis: Esmay had Sanfilippo Syndrome (MPS IIIA), a rare genetic disorder sometimes known as “childhood dementia.” It leads to rapid cognitive deterioration, memory loss, personality changes, and, in the end, death. Children with the disease seldom live into their teens.
The disease affects one in every 70,000 births. According to the Cure Sanfilippo Foundation, the disorder causes youngsters to lose all of their acquired skills, and Sanfilippo Syndrome is predicted to impact one out of every 70,000 births.
Most families notice something is wrong between the ages of one and six, when their kid stops meeting milestones or begins to lag behind. What seemed like a normal childhood suddenly becomes a terrible path of delays, misunderstanding, and fear.
“Esmay doesn’t know much about it, as she’s in her own little world most of the time, but it’s been incredibly tough for us,” Sabrina told me. “She can hardly move, cannot speak, has little consciousness, and does not engage with others. I don’t think she always recognizes who we are.
The family is now facing the unimaginable: witnessing their 5-year-old daughter slip away in front of their eyes.
“She is now the healthiest she’ll ever be,” Sabrina continued. “She’ll get worse every day until her body totally gives up on her.”
With no treatment for Sanfilippo syndrome, Alisha and her loved ones are doing everything possible to make each day matter. They’ve started a GoFundMe page to assist in buying the specialist equipment Esmay will soon require—and to help make happy memories while they still can.
“She may not remember us one day,” she remarked, “but we’ll remember her smile forever.”
💜 To help Esmay and her family, please visit their GoFundMe page here. Every sharing and gift puts them one step closer to treasured memories they’ll have forever.