A family have spoken of their grief after realizing that their 5-year-old child is unlikely to reach adulthood due to a rare and debilitating condition.
When five year-old Esmay Ford was born, her mother, Alisha Morris from Devon, UK, couldn’t be happier but in just a few years, things would take a dramatic turn.
Now, her family are just focused on giving her the best life possible.
Back in 2021, at just two and a half years old, the mother became concerned with her daughter’s health.
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After taking her to healthcare professionals, Alisha was told that blood tests revealed that Esmay had an auto immune disease and overactive thyroid.
However, the family would get a clearer picture of the child’s upcoming health issues as she was diagnosed with Sanfilippo Syndrome (MPS IIIA).
This is a rare and life-limiting condition genetic form of 'childhood dementia' that causes mental deterioration, memory loss and personality changes. Esmay's life expectancy is between 10 to 18 years old, as her condition is expected to worsen.
The child's grandmother has spoken out about the personality change that she spotted that caused concern as well as the health issues that were occurring that caused her to worry.
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As a toddler, Esmay started to talk and loved playing in the park, dancing, and interacting with others.
However, when she was two and a half years old, things began to change.
Esmay’s grandmother, Sabrina Peake said: "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.
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"She would pick up bugs and colds and would be ill for weeks at a time - we knew something was wrong.
"When her hair started to fall out, we took her to Exeter Hospital A&E and had to really push for answers."
Sabrina also spoke about the difficulties she has seen the child go through and how they are trying to move forward.
Most heartbreakingly, she said that she doesn’t believe Esmay recognizes her family now.
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She said: “We knew something was wrong when she stopped talking, and then her hair started to fall out in big clumps.
"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.
"She can barely walk and she can't talk, and she has no awareness and doesn't interact with anyone.
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"I don't think she always knows who we are.
"She is now is the healthiest she'll be, she'll get worse every day until her body totally gives up on her."
Esmay's family are now raising money to cover the costs of the equipment she will need as her condition deteriorates, as well as 'making memories' with her while they can.
They have set up a GoFundMe page to help fund some of the specialist equipment as well as future trips.
Gerrard Kaonga