My daughter, 12, has 'childhood Alzheimer's,' here are the symptoms other parents should look out for

A heartbroken mom has opened up about her 12-year-old daughter's excruciating battle with a rare terminal disorder that has caused her to develop dementia. 

Texas-based mom Ashley Funke, 37, felt her world crumble around her when her tween daughter, Alivia, was diagnosed with Sanfilippo syndrome, which is a rare terminal genetic neurodegenerative disorder that is often referred to as 'childhood Alzheimer's.'

The disease aggressively attacks the brain and has left Alivia with the mental state of a child who is between three and five years old.

Now, in a bid to spread awareness about the uncommon disorder, the 37-year-old is sharing the story of how her daughter was diagnosed. 

She revealed that Alivia began suffering from the illness at just six years old, and she now struggles with walking, talking, academics and even moving her facial features. 

A heartbroken mom has opened up about her 12-year-old daughter's excruciating battle with a rare terminal disorder that has caused her to develop dementia

Ashley revealed that her daughter was diagnosed with the disease much later in life than other children who have the same disorder.

At the age of six, Alivia began declining at school and struggled to take in any new information. 

Four years later, the then 10-year-old was diagnosed with ADHD and autism. 

But by the time her daughter hit 12, Ashley knew her child was suffering with something much more serious.

As Alivia's health continued to decline, Ashley decided to have her undergo genetic testing, it was then that she tested positive for Sanfilippo syndrome.

According to Kid's Health, Sanfilippo syndrome affects one in 70,000 births and it is caused by the change of a single gene in a child's body, which makes their system unable to break down certain carbohydrates (sugars). 

This then leads to cognitive issues, and affects the brain and nervous system. 

The family learnt that Alivia was suffering with type A of the condition, which is the most aggressive form, and leads to early dementia, struggles with walking and talking, and can even slow down the development of facial features.

Texas-based mom Ashley Funke, 37, felt her world crumble around her when her tween daughter, Alivia, was diagnosed with Sanfilippo syndrome

The disease aggressively attacks a child's brain and it has left Alivia with the mental state of a child who is between three and five-year-old

Now, in a bid to spread awareness about the uncommon disorder, the 37-year-old is sharing the story of how her daughter was diagnosed

The mom admitted that following the diagnosis, it was increasingly difficult for her other children to come to terms with their sibling's illness.

The 37-year-old said: 'We were absolutely shocked, devastated, there was a brief moment of relief in there too, for a moment getting a diagnosis I felt like I finally figured it out. 

'Having to tell our other children was rough because that's their sibling and I had to tell them one day she won't be around anymore.  

'They took it hard, Alivia is such a light and so pure, she is the sweetest soul you will ever come across, there's not a person on this earth she's ever been anything but kind and loving to.'

Since being diagnosed, Alivia's state has continued to decline but as her condition is slower developing that typical cases, the effects have not come into full force yet. 

'Her short-term memory is very poor, and her long-term memory is sporadic, sometimes she remembers things or places she's been and other times she doesn't remember at all,' her mom said.

She revealed that Alivia began suffering from the illness at just six years old as she now struggles with walking, talking, academics and even moving her facial features

Since being diagnosed, Alivia's state has continued to decline but as her condition is slower developing that typical cases, the effects have not come into full force yet

'Learning it was terminal there's no cure, no treatment and no survivors, it was a huge punch to the gut and the devastation set it instantly. I spent many nights unable to sleep or eat.' 

She revealed that her daughter was mostly affected in areas of her memory - adding that her short term memory was highly affected. 

With her also living with the mental state of a child between the ages of three and five, it means she takes more of an interest in subjects for that age group rather than her own. 

'We haven't run into anyone being mean to her. She's pretty protected with kids at school, teachers and staff, and, of course, our families and her amazing siblings,' Ashley said.

'Alivia struggles academically, she cannot read or legibly write or do math so she struggles academically, she also has a hard time staying in conversation because of her cognitive abilities and being more on the age level of a toddler, her speech is also affected.'

The mom admitted that following the diagnosis, it was increasingly difficult for her other children to come to terms with their sibling's illness

She revealed that her daughter was mostly affected in areas of her memory - adding that her short term memory was highly affected

Ashley explained that she was unaware of how her daughter's future would look - adding that she hoped a cure would come one day

Ashley explained that she was unaware of how her daughter's future would look - adding that she hoped a cure would come one day. 

'We aren't really sure what her future holds, with Alivia being diagnosed later in life, that means she has a slower progression of, we are still unsure how she is slowly progressing and why, or what that really means for her,' she said.

'Our hope is that Alivia will get to keep her voice, abilities to walk, talk and enjoy her favorite foods and run and play with her siblings for as long as we possibly can and give her the best life full of love and joy. 

'We are hopeful with awareness will come more trials that will one day bring forth a cure so no family has to ever watch their children deteriorate the way we do or any of our Sanfilippo community families do.'