A heartbroken mother has spoken out about her 12-year-old daughter’s terrifying battle with a rare terminal disorder that has caused her to develop dementia.
Ashley Funke, a 37-year-old mother living in Texas, felt her world crash down around her 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 has left Alivia with the mental state of a three- to five-year-old child.
Now, in a bid to raise awareness about the rare disorder, the 37-year-old is sharing the story of how her daughter was diagnosed.
She revealed that Alivia began suffering from the disease at the age of six and now has difficulty walking, talking, performing her studies and even moving her facial features.
A heartbroken mother has opened up about her 12-year-old daughter’s terrifying 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 suffer from the same disorder.
At the age of six, Alivia began to fail in school and had difficulty assimilating any new information.
Four years later, the then 10-year-old boy was diagnosed with ADHD and autism.
But when her daughter turned 12, Ashley knew she was suffering from something much more serious.
As Alivia’s health continued to deteriorate, Ashley decided to have her genetically tested, which is when she tested positive for Sanfilippo syndrome.
According Child’s HealthSanfilippo syndrome affects one in every 70,000 births and is caused by a single gene change in a child’s body that makes their system unable to break down certain carbohydrates (sugars).
This leads to cognitive problems and affects the brain and nervous system.
The family learned that Alivia suffered from type A of the disease, which is the most aggressive form and leads to early dementia, difficulties walking and speaking and can even delay the development of facial features.
Ashley Funke, a 37-year-old mother living in Texas, felt like her world was crashing down around her when her teenage daughter, Alivia, was diagnosed with Sanfilippo syndrome.
The disease aggressively attacks the child’s brain and has left Alivia with the mental state of a three- to five-year-old.
Now, in a bid to raise awareness about the rare disorder, the 37-year-old is sharing the story of how her daughter was diagnosed.
The mother admitted that after the diagnosis, her other children found it increasingly difficult to accept their brother’s illness.
The 37-year-old said: ‘We were absolutely shocked, devastated, there was a brief moment of relief as well, for a moment when I got a diagnosis I felt like I had finally figured it out.
‘It was hard to tell our other children because that’s their sister and I had to tell them that one day she wouldn’t be around anymore.
“They took it very hard, Alivia is so light and so pure, she is the sweetest soul you will ever meet, there is not a person on this earth that she has been anything but kind and loving to.”
Since she was diagnosed, Alivia’s condition has continued to worsen, but because her condition develops more slowly than typical cases, the effects have not yet emerged in full force.
“His short-term memory is very poor and his long-term memory is sporadic, sometimes he remembers things or places he’s been and other times he doesn’t remember anything at all,” his 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 she was diagnosed, Alivia’s condition has continued to worsen, but because her condition develops more slowly than typical cases, the effects have not yet emerged in full force.
“When I found out it was a terminal illness, with no cure, no treatment, and no survivors, it was a huge blow to the stomach and the devastation set in immediately. I spent many nights without being able to sleep or eat.”
She revealed that her daughter was mainly affected in areas of her memory and added that her short-term memory was severely impaired.
Since he also lives with the mental state of a three- to five-year-old, it means that he is more interested in topics specific to that age group than his own.
“We haven’t seen anyone be mean to her. She is very good with the kids at school, the teachers and staff, and of course our families and her wonderful siblings,” Ashley said.
‘Alivia struggles academically, she cannot read or write legibly or do math so she has academic difficulties, she also has difficulty holding a conversation due to her cognitive abilities and being more at the age level of a toddler, her speech is also affected.’
The mother admitted that after the diagnosis, it became increasingly difficult for her other children to accept their brother’s illness.
She revealed that her daughter was mainly affected in areas of her memory, adding that her short-term memory was greatly affected.
Ashley explained that she did not know what her daughter’s future would be like and added that she hoped a cure would one day come.
Ashley explained that she did not know what her daughter’s future would be like and added that she hoped that one day a cure would come.
“We’re not really sure what the future holds for her, as Alivia was diagnosed later in life, meaning she has a slower progression, we’re still not sure how she’s progressing slowly and why, or what that really means for her,” she said.
‘Our hope is that Alivia can keep her voice, her ability to walk, talk and enjoy her favorite foods, run and play with her siblings for as long as possible and give her the best life filled with love and joy.
“We are hopeful that with awareness, more trials will emerge that will one day bring a cure so that no family has to watch their children deteriorate like we or any of the families in our Sanfilippo community do.”
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