STANLY COUNTY, N.C. (WGHP) — As a second grader, Sadie Haywood has managed to build something many adults only dream of: a robust and growing social media following.

There’s just something about Sadie that people fall in love with.

“I think it’s just her personality,” said Ashley Haywood, Sadie’s mom. “She has that joyful, fun … full of love and life, and it’s kind of hard not to just want to see what she’s doing.”

Sadie’s family had one goal when they launched their Instagram page @SavingSadieRae several years ago: raise awareness about a disease most people have never heard of.

“We really wanted to make a difference, and we wanted to gain a lot of followers to reach people all over the world,” Ashley said. “We really had no idea it would go as crazy as it has.”

As a baby, Sadie was diagnosed with Sanfilippo syndrome, which is a rare degenerative genetic disease that affects 1 in 70,000 births. There is no cure for the disease referred to as “childhood dementia,” and it’s terminal.

On March 8, Sadie celebrates her golden birthday and turns eight. It is a bittersweet milestone for her family.  

“The life expectancy of these kids is around 15, and when you keep adding numbers to her age, it gets you closer to that,” Ashley said. “I’ll never not celebrate a birthday or go all out for it because she’s a kid, and that’s what you do. But it’s harder getting to that age of her life expectancy.”

As the disease progresses, Sadie has lost most of her words, and speech has become very limited over the past year. 

“She was always talking and singing and dancing, and she had a huge vocabulary for a young age,” Ashley said. “At two years old, she knew her ABCs, she could count to ten and she was so very smart. And then the disease started taking over, and it does break your heart.”

But Sadie’s family is determined to be happy and live life to the fullest, and that’s what they share with their nearly 200,000 followers on Instagram. 

“It’s very easy to not have that joy because you do have a terminal diagnosis. It’s easy to go the opposite way and just be mad and sad, and that’s really not a way to live,” Ashley said. “I couldn’t live like that. I had to show her the world, and I had to give her the world. I have to do everything in my power, and I have to be happy, too.”

In late February, Sadie’s story was shared with the Food and Drug Administration to advocate for more compassionate use of trials and drugs for children with Sanfilippo syndrome who don’t have any other options.

In honor of Sadie’s birthday, her family is raising money for the Cure Sanfilippo Foundation.

You can find a link to donate on the family’s Instagram page @SavingSadieRae.