An eight-year-old North Carolina girl who has been diagnosed with childhood dementia and cannot 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.
This rare genetic metabolism condition causes serious problems in the brain and nervous system, causing seizures and movement difficulties.
Patients face a limited life expectancy, with the prospect of only 15 years as the disease progresses. There is currently no cure for this disease, which affects 1 in every 70,000 births.
But despite the struggles 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 when she was just three months old, leaving her with seizures, movement disorders and a limited life expectancy.
The young woman and her mother, Ashley, launched their Instagram page @SavingSadieRae and have been trying to raise awareness about the disease ever since.
On March 8, when Sadie turned eight, the hopeful mother said how difficult it has been for the family.
‘At the age of two he knew the alphabet, could count to ten and was very intelligent. And then the disease started to take over and it breaks your heart,” Ashley said.
With almost 200,000 followers on his instagram pageAshley 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 get so crazy.”
On March 8, as Sadie celebrated her birthday, the hopeful mother said how difficult it has been for the family to accept her reality.
“The life expectancy of these children is around 15 years, and when you keep adding numbers to their age, you get closer to that age,” he wrote.
‘I will never stop celebrating a birthday or go all out because she’s a girl, and that’s what you do. But it is more difficult to reach that age than her life expectancy.
‘She was always talking, singing and dancing, and had a huge vocabulary for a young age.
‘At the age of two he knew the alphabet, could count to ten and was very intelligent. And then the disease began to take over you and breaks your heart.
The family is also collaborating this year with the Cure Sanfilippo Foundation to raise $1 million for Sadie for her treatment.
The family never stops celebrating 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 other way and just be angry and sad, and that’s really not a way to live,” Ashley said.
Sanfilippo syndrome is a rare inherited disorder that causes serious problems in the brain and nervous system. To date, there is no cure for the disease and it is known to affect 1 in every 70,000 births.
But despite Sadie’s medical difficulties, the family is focused on savoring the happy moments.
‘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 not really a way to live.
‘I couldn’t live like this. She had to show him the world and she had to give him the world. “I have to do everything I can and I have to be happy too,” Ashley said.
For his birthday this year, the family is collaborating with the Cure Sanfilippo Foundation to raise a million dollars for his treatment.
So far, they have been able to raise $105,473.