An eight-year-old North Carolina girl diagnosed with childhood dementia and unable to walk or talk is on a mission to raise awareness about her rare disease.
Sadie Haywood was diagnosed with Sanfilippo Syndrome when she was just three months old.
The rare disorder of genetic metabolism causes serious problems to the brain and nervous system, causing seizures and movement problems.
Patients face a limited life expectancy, with an outlook of only 15 years as the disease progresses. There is currently no cure for the disease which is known to occur in 1 in 70,000 births.
But despite the challenges she faces, Sadie and her mother, Ashley, are on a mission to encourage positivity while raising awareness about the disease.
Sadie Haywood was diagnosed with Sanfilippo syndrome at just three months old, which left her with seizures, movement disorders and limited life expectancy
The youngster and her mother Ashley launched their Instagram page @SavingSadieRae and have since been trying to raise awareness about the disease
On March 8, when Sadie turned eight years old, the hopeful mother expressed how difficult it was for the family
‘At the age of two she knew her ABCs, she could count to ten and she was so very smart. And then the disease started to take over, and it breaks your heart,” Ashley said
With almost 200,000 followers on their Instagram pageAshely said Fox8: ‘We really wanted to make a difference, and we wanted to gain a lot of followers to reach people all over the world.
“We really had no idea it would go this crazy.”
On March 8, as Sadie celebrated her birthday, the hopeful mother expressed how difficult it was for the family to accept their reality.
“The life expectancy of these children is around 15 years, and if you keep adding numbers to her age, you get closer to that,” she wrote.
“I will never not celebrate a birthday or go all out because she’s still a kid, and that’s what you do. But it is more difficult to reach that age of her life expectancy.
‘She was always talking, singing and dancing, and from an early age she had a huge vocabulary.
‘At the age of two she knew her ABCs, she could count to ten and she was so very smart. And then the disease started to take over, and it breaks your heart.”
The family is also partnering with the Cure Sanfilippo Foundation this year to raise a million dollars for Sadie for her treatment.
The family never fails to celebrate their happy moments and tries to live life to the fullest
‘It’s very easy not to have that joy because you have a terminal diagnosis. It’s easy to go the opposite way and just be angry and sad, and that’s really no way to live,” Ashley said.
Sanfilippo syndrome is a rare, hereditary condition that leads to serious problems in the brain and nervous system. Currently there is no cure for the disease and it is known to occur in 1 in 70,000 births
But despite Sadie’s medical problems, the family focuses on enjoying the happy times.
‘It’s very easy not to have that joy because you have a terminal diagnosis. It’s easy to go the opposite way and just be angry and sad, and that’s really no way to live.
‘I couldn’t live like this. I had to show her the world, and I had to give her the world. I have to do everything I can, and I also have to be happy,” Ashley said.
For her birthday this year, the family is working with the Cure Sanfilippo Foundation to raise a million dollars for her treatment.
So far they have raised $105,473.
