My 12-Year-Old Daughter Has ‘Childhood Alzheimer’s,’ Here Are The Symptoms Other Parents Should Watch For
A heartbroken mother opens up about her 12-year-old daughter’s gruelling battle with a rare, terminal condition that has left her developing dementia.
Texas mother Ashley Funke, 37, felt her world fall apart when her teenage daughter Alivia was diagnosed with Sanfilippo syndrome, a rare terminal genetic neurodegenerative disorder often referred to as “childhood Alzheimer’s.”
The disease aggressively attacks the brain and Alivia is in a mental state equivalent to that of a child between three and five years old.
To raise awareness of this rare condition, the 37-year-old woman shares how her daughter was diagnosed.
She said Alivia began suffering from the disease at the age of six and now has difficulty walking, talking, doing schoolwork and even moving her face.
A heartbroken mother opens up about her 12-year-old daughter’s gruelling battle with a rare terminal condition that has left her developing dementia
Ashley said her daughter was diagnosed with the disease much later in life than other children with the same disorder.
From the age of six, Alivia’s performance at school deteriorated and she had difficulty absorbing new information.
Four years later, the then 10-year-old boy was diagnosed with ADHD and autism.
But when her daughter was 12, Ashley knew her child was suffering from something much more serious.
As Alivia’s health continued to deteriorate, Ashley decided to undergo genetic testing, which revealed she was positive for Sanfilippo syndrome.
According to Children’s healthSanfilippo syndrome occurs in one in 70,000 births and is caused by a change in one gene in a child’s body that makes the body unable to break down certain carbohydrates (sugars).
This leads to cognitive problems and affects the brain and nervous system.
The family was told that Alivia had type A of the condition, the most aggressive form that leads to early dementia, problems walking and talking, and even delayed development of facial features.
37-year-old Texas mother Ashley Funke felt her world come crashing down when her teenage daughter Alivia was diagnosed with Sanfilippo syndrome
The disease aggressively attacks a child’s brain and Alivia has been given the mental state of a child between three and five years old.
To raise awareness about this rare condition, the 37-year-old is now sharing the story of how her daughter was diagnosed
The mother admitted that it became increasingly difficult for her other children to cope with their sibling’s illness after they were diagnosed.
The 37-year-old says: ‘We were very shocked, devastated, but there was also a moment of relief. When I got the diagnosis, I felt like I finally knew.’
“It was hard to tell our other children because she’s their brother or sister and I had to tell them that one day she’ll be gone.
‘They have had it tough, Alivia is so light and pure, she is the sweetest soul you will ever meet, there is not a person on earth she has not been kind and loving to.’
Since Alivia was diagnosed, her condition has continued to deteriorate. But because her condition is developing more slowly than most other cases, the full effects are not yet felt.
“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 anything at all,” her mother said.
She revealed that Alivia began suffering from the disease at the age of six, and now has difficulty walking, talking, studying and even moving her facial features.
Since her diagnosis, Alivia’s condition has continued to deteriorate, but because her condition progresses more slowly than most other cases, the effects are not yet fully felt.
‘When I heard it was terminal, there was no cure, no treatment and no survivors, it was a huge blow to my stomach and the devastation set in straight away. I couldn’t sleep or eat for nights.’
She said her daughter was mainly suffering from memory problems and that her short-term memory had been severely affected.
Because she also has the mental state of a child between three and five years old, she is more interested in topics that apply to that age group than in her own topics.
“We haven’t had anyone be mean to her. She’s pretty sheltered with kids at school, teachers and staff, and of course our families and her wonderful siblings,” Ashley said.
‘Alivia struggles with her studies. She can’t read, write or do math, so she struggles with her studies. She also struggles with having a conversation because of her cognitive abilities. Because she’s more at a toddler level, she also struggles with her speech.’
The mother admitted that it became increasingly difficult for her other children to cope with their sibling’s illness after they were diagnosed.
She revealed that her daughter was particularly affected in areas of her memory, adding that her short-term memory was severely affected
Ashley explained that she didn’t know what her daughter’s future would hold – adding that she hoped a cure would one day come
Ashley explained that she didn’t know what her daughter’s future would hold. She hoped that one day there would be a cure.
“We don’t really know what the future holds for her. Alivia was diagnosed later in life, which means her disease is progressing more slowly. We still don’t know how she is progressing so slowly or why, or what that really means for her,” she said.
‘We hope that Alivia can keep her voice, her ability to walk, talk, her favorite food and her ability to run and play with her brothers and sisters for as long as possible and that we can give her the best life full of love and joy.
“We hope that with awareness, more trials will come that will one day yield a cure, so that no family will ever have to watch their children deteriorate as we or the families in the Sanfilippo community have.”
