CHESTERFIELD COUNTY, Va. -- Wednesday marked a milestone in Virginia as Governor Glenn Youngkin recognized the first-ever "Childhood Dementia Day" in the state.
It’s what a Chesterfield family has been pushing for in their fight to raise awareness for the rare disease their daughter has.
CBS 6 first introduced viewers to 9-year-old Abby Alvey in December 2023.
Abby is one of only a couple hundred children across the country with the neurologically progressive disease commonly referred to as childhood dementia.
Abby's family wants her to live a lifetime in a short time due to her terminal diagnosis.
They are also fighting to raise awareness to improve options for the treatment of childhood dementia.
Their fight led Abby’s father, Garland, to celebrate the first-ever proclamation of Childhood Dementia Day in Virginia on Wednesday.
They are also celebrating the nonprofit's first event that will educate the community on what Abby and other children suffering from childhood dementia are experiencing.
“To this proclamation and have it be such a big deal has meant the world. Virginia leadership is so interested in this. They have conversations and are pushing forward what is typically a neglected disorder," Garland said.
The event was centered around making memory boxes - a nod to remembering this moment as the ability to remember, walk, speak, and eat is what the disease could take away from Abby.
The family also celebrated Abby's wins over the last year.
Abby spoke in front of the FDA to get treatments approved, spoke at a 'Rare Disease Day' to educate her elementary school peers, and a book inspired in part by Abby's journey.
“It’s an emotional thing for us to see how far we’ve come and see how many people have shown up for us," Garland said.
Abby's family is holding these moments close, celebrating their wins and celebrating their little girl's fight against a very unfair disease.
“What keeps us going through these closed doors is her," Garland said. "And the possibility that Abby and so many of these children are not experimental data points but they have the chance to thrive and survive."
If you are interested in learning more about the organization you can click here.
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