A heartbroken mother has revealed how she spotted her daughter’s ‘childhood Alzheimer’s’ after she stopped talking aged two – and is now desperate to make memories before it’s ‘too late’.
Esmay Ford, five, from Crediton, Devon, was diagnosed with Sanfilippo Syndrome (MPS IIIA) on May 15 – a rare, life-limiting genetic form of childhood dementia that causes mental deterioration, memory loss and personality changes.
Esmay’s mother, Alisha Morris, 24, and grandmother, Sabrina Peake, 45, grew concerned about the ‘healthy’ tot in 2021, after she stopped talking and was constantly ‘picking up colds’.
The family was initially told by doctors that Esmay had an autoimmune disease and overactive thyroid, which had caused her brain to stop developing.
They ‘hoped and prayed’ that medication would help with her brain development, but after a series of genetic testing, Esmay was diagnosed with MPS IIIA.
Also known as ‘childhood Alzheimer’s’ due to the similarity in symptoms, the disorder affects the brain and nervous system causing cognitive decline.
The degenerative disorder means that Esmay’s life expectancy is between 10 to 18 years old, and her condition will get progressively worse until ‘her body totally gives up on her’.
Five-year-old Esmay is now unable to recognise her family and needs ‘constant supervision’ as she is unable to walk and has ‘no awareness of danger’.
Esmay Ford (pictured), five, was diagnosed with Sanfilippo Syndrome (MPS IIIA) on May 15 – a rare, life-limiting genetic form of childhood dementia that causes mental deterioration, memory loss and personality changes
Her family are desperate to ‘give her the best life’ before her condition becomes too severe, and are raising money for a trip to Disneyland, as well as vital equipment such as a modified bed and shower.
Flight attendant Sabrina 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.
‘I don’t think she always knows who we are. She is now the healthiest she’ll be, she’ll get worse every day until her body totally gives up on her.’
Sabrina was ‘over the moon’ when her daughter Alisha gave birth to a ‘happy and healthy’ baby girl on 9th August 2019.
As a toddler, Esmay started to talk and loved playing in the park, dancing, and interacting with others.
In 2021, at two and a half years old, Sabrina and Alisha noticed that Esmay had become withdrawn and had stopped talking.
Esmay’s mother, Alisha Morris, 24, and grandmother, Sabrina Peake (pictured with Esmay), 45, grew concerned about the ‘healthy’ tot in 2021, after she stopped talking and was constantly ‘picking up colds’
The family was initially told by doctors that Esmay (pictured when she was a baby) had an autoimmune disease and overactive thyroid, which had caused her brain to stop developing
Esmay’s family are now raising money to make memories with the youngster before it is ‘too late’. Esmay with her mother Alisha
Sabrina explained: ‘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.
‘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.’
Blood tests revealed that little Esmay had an autoimmune disease and overactive thyroid, and after further genetic testing she was diagnosed with MPS IIIA.
Doctors have warned her family that her mobility and cognitive ability will continue to deteriorate, and that she will have a significantly shorter life expectancy.
Sabrina said: ‘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. Our biggest fear aside from losing her at such a young age, is watching her suffer.’
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.
Sabrina said: ‘We don’t know what the future holds, but we’re raising money to get Esmay all the things she will need to support her, and make the remainder of her life as comfortable as possible.
Before things started to get worse for Esmay (pictured), she enjoyed playing in the park, dancing and chatting with others but things soon started to change which prompted her family to seek medical advice
Esmay was diagnosed with Sanfilippo Syndrome (MPS IIIA) in May 2025
Esmay’s mother has hopes to raise enough money to be able to take her to Disneyland
Money raised via Esmay’s GoFundMe page will also go towards purchasing special equipment needed to make her day-to-day life more comfortable
‘She will need special car seats, a bath and shower chair, a padded, zip up cot and bed, a reclining disabled special buggy, plus many more things.
‘We also want to give her the best life now, before she gets worse. We’d love to take her to Disneyland, but this is the healthiest she’ll be so we’d need to go soon.
‘I have watched my beautiful granddaughter rapidly decline over the last few years which is heartbreaking.
‘I would give anything to hear her talk, laugh, or even smile again. To know that I will never hear her speak again is so hard to accept.’
You can donate to the GoFundMe here.
