The family of a little girl afflicted with what is sometimes called “childhood Alzheimer’s” is asking the legislature to make her birthday a day to raise awareness, to thereby improve the lives of other children faced with this rare condition.
Gianna Marie Wacker wasn’t expected to live past her early teens. When she sat with her family in a House committee hearing last week she was exceeding those expectations.
“Our Gianna is a unicorn. Her doctors describe her as that because she’s 15 years old, and she’s still doing pretty good, so we’re proud to have her here today,” Representative Holly Jones (R-Eureka) told her fellow legislators.
Gianna smiled through the entire hearing, as her siblings, parents, and grandparents laughed and smiled with her, proud of their “unicorn.” Just feet away, Jones and others fought back tears explaining Gianna’s condition, Mucopolysaccharidosis type III, more commonly called “Sanfilippo Syndrome.” It is thought to affect as few as nine out of every million babies born, worldwide.
Gianna’s younger brother, Luke, told lawmakers, “Because of this disease, G has never learned to read. She used to be able to play soccer and enjoy dance class. She is losing the ability to write letters to her friends and communicate appropriately.”
What they’re asking of the legislature is to make November 13 each year, “Believe in Gianna Day.”
“A naming bill doesn’t seem very powerful, but awareness is the key factor in this disease to help promote a cure,” explained her father, Jackson Wacker. “Rare disease, as most of you know, is a difficult situation for any family, for any individual, and the most powerful thing we can do is to raise money to help find a cure, and awareness is a key component in that. [‘Believe in Gianna’] will not only be a huge win for our family, but a huge win for any child suffering from a rare disease that will take their life.”
Gianna’s mother, Theresa Wacker, said awareness is also important for potentially helping other children who have the condition but it hasn’t been diagnosed. She explained to the House Committee on Tourism that before doctors finally stumbled upon Gianna’s diagnosis on June 15, 2021, the family had been wondering for six years what was wrong.
Backers of House Bill 2580 explained that an earlier diagnosis could mean that a child would be more likely to get into medical trials. Such trials could benefit not only participants but others suffering from the condition, as doctors search for a cure.
Theresa said the bill also seeks to build on, and continue, what’s been happening in her community. Since Gianna’s diagnosis, there have been several fundraising events, including two golf tournaments held at a local golf club; signs have sprung up around Eureka with the word “believe,” in Gianna’s handwriting; and more than $100,000 has been raised for the Cure Sanfilippo Foundation.
“This is a movement,” Theresa told the committee. “G is moving mountains right now. She is changing the world with her smile every minute of the day, and that is what we hope to do and continue to do, so [Believe in Gianna Day], it would be amazing for not just her but for all these children in the world suffering from this.”
Jones said what the family has done has been truly inspiring, and they hope a Believe in Gianna Day will expand it.
As Luke Wacker put it, “Please consider Believe in G Day in Missouri to celebrate not only my sister but all these other children suffering from Sanfilippo Syndrome. We believe in G, and I want all of you to believe in G too.”
Note to media outlets: the original version of the bill would have created “Believe in G Day,” but the committee voted to change that (with the family’s blessing) to “Believe in Gianna Day.” Some audio cuts reflect the earlier version of the proposal.