My five-year-old daughter has childhood Alzheimer's and isn't expected to live past her teen years - these are the two early symptoms I spotted
A heartbroken mother 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, 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'.
Her family are desperate to 'give her the best life' before her condition becomes too severe, and are raising money for a trip to Disney Land, as well as vital equipment such as a modified bed and shower.
Sabrina, a flight attendant, from Crediton, Devon, 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 is 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.
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 auto immune 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.
'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 - https://http://www.gofundme.com/f/esmay-receive-all-special-equipment-living-with-sanfilippo
WHAT IS SANFILIPPO SYNDROME?
Sanfilippo syndrome is a genetic and terminal disorder that affects around one in 70,000 live births.
Victims lack an enzyme that is essential for normal cellular function.
The condition eventually causes a buildup of a toxic material - heparin sulfate - resulting in dementia, loss of speech, blindness and eventual death.
The disease is referred to as childhood Alzheimer's due to the effects.
Sufferers typically die before they are out of their teens.
There is no known cure, however clinical trials are being conducted in order to find one.
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