Charlotte Schmitt is a super hero. While to the outside world she may appear to be simply an energetic almost four-year-old, she’s quickly showing the community of Oakdale, as well as the country, she is much more.
Parents Courtney and David Schmitt, along with the rest of the world are learning the uniqueness and specialty of their second child. Charlotte’s super power is one which is shared with less than 500 other children in the United States.
The Heritage School student lives with a condition known as Ataxia Telangiectasia (A-T), a rare, neurodegenerative genetic condition that is caused by mutations in the ataxia telangiectasia mutated gene. Prognosis for the less than 500 navigating this disease and their families is 20-plus years. By the age of 10, most children like Charlotte are in a wheelchair, and many develop cancer (leukemia or lymphoma) in their teens. There is no current treatment or medication, but research and awareness thanks to families like the Schmitt’s is on the rise.
“As the child gets older and as children are living longer with A-T, they’re finding that they’re developing the ‘hardened cancers,’ they’re calling it,” mom Courtney shared of prognosis beyond the age of 20, “as opposed to leukemia and lymphoma developing. They don’t quite know why.”
As a super hero, Charlotte started her journey into life like every other “well” child. Courtney’s pregnancy went well, just as it had with her son James (age 6) and Charlotte was born in April of 2021 with no identifiable concerns.
Hitting all her markers as she should, the family of four had no reason to suspect what was to come. Around age one-and-a-half, Courtney shared she noticed her daughter “wobbled” a bit more than she felt was normal, since taking her first step at the age of one.
“She just never got more steady,” the mother of two shared. “She never lost that toddler wobble.”
Turning to her pediatrician she was encouraged to place Charlotte in high top sneakers to help with her “toe walking,” and so … they did. Yet that proved to be a temporary band-aid for an ailment which was bigger than walking on her toes.
Returning to her pediatrician and advocating for her daughter, Courtney said the then two-year-old Charlotte was referred to a pediatric physical therapist. After six weeks of PT, it was identified that Charlotte had a form of Ataxia. An early discovery that would begin the spark and awareness of this developing super hero.
A number of tests including an MRI, as well as genetic testing were performed. Much to the family’s delight the MRI showed nothing, yet Charlotte was still “wobbly.”
The genetic testing of Charlotte, along with mom and dad, would be the link needed to bring the family a diagnosis.
“One of the mysteries of A-T, they don’t know why the Purkinje cells, which are in the cerebellum are the first to die,” Courtney stated, noting that these cells are responsible for processing sensory information and motor coordination and due to the nature of the disease, don’t regenerate. “The cerebellum is in charge of movement and coordination. So that’s why Ataxia is the first symptom.”
It was December 2023, just days before the Christmas holiday break. Courtney and David are both special education teachers for Oakdale Junior High School. Faced with a diagnosis which was both daunting and overwhelming, the couple put nose to the grindstone and counted the days until they got a break.
While the break may have come by the way of time off, Courtney did what she does best: research. Sharing if there was something to learn about this condition, she was determined to find it and find it all.
“When I first started learning about A-T, I was googling what seemed like every other word,” she said, laughing.
“There’s been many times where we’ve kind of looked at each other and said, thank God we’re in Oakdale and thank God we’re special education teachers,” Courtney said, noting that the couple knows more about children with special needs than most.
In 13, no-so-short months, the family of four has been on a whirlwind of travel, learning and meet and greets.
Following Charlotte’s diagnosis, David and Courtney found themselves on a Zoom call with the Executive Director of A-T Children’s Project, a 501(c)3, based out of Florida and started by a father 30 years ago when both of his sons were diagnosed with A-T.
“It kind of immediately felt like a weight was lifted,” Courtney said of the initial Zoom call. During that call the couple learned of research and clinical trials happening around the world for children just like Charlotte.
In February of 2024, they were invited to St. Jude’s in Memphis.
“The doctors at St. Jude’s wanted to talk to us, because they’re interested in one of Charlotte’s variants,” Courtney shared, adding that they now travel there every six months so that baseline data can be gathered on Charlotte’s progression and condition. This helps maintain her as a viable candidate for treatment or therapy should that become available.
The Schmitt family is grateful for the resources through A-T Children’s Project, as well as the love and care at St. Jude’s, yet the expenses of parenting a child with a rare disease are ever present.
It’s estimated by the age of 10 Charlotte will need a wheelchair. They may need a walker and have also given thought to investing in a Service Dog. Current status, the family has been told, is a “honeymoon” phase, meaning they won’t see much decline until Charlotte reaches five to six years old and then again between six and nine, they will see significant decline.
Then there are the current expenses which come with travel and the co-pays of routine lab work, MRI’s, physical and occupational therapy.
“Her body is in constant movement,” mom shared, adding that it tends to wear the preschooler out. But Charlotte is learning her own strategies to help with the movement and Courtney and David are teaching them to her to help her navigate the wobbliness and energy expense.
“It doesn’t slow her down at all. She’s a little daredevil, which is terrifying,” mom said through laughter. “She’s gonna need that feistiness.”
As they have it dialed in as best they can from the home front, the Schmitt family could use financial help. Their goal, however, by hosting an upcoming, much anticipated fundraiser is not just to raise money to help offset expenses but also to aid the A-T Children’s Project which continues to fund research and maintains a vigilance to find a cure for this rare disease.
Thanks to the help of the Oakdale Lions Club, Love Oakdale and a small army of community members, a Dinner and Silent Auction fundraiser will be hosted for “Charlotte’s Cure” on Saturday, Feb. 22 at the Gene Bianchi Community Center, 110 S. Second Ave., Oakdale from 5 p.m. to 10 p.m.
Proceeds from sponsorships and event ticket sales will go directly to the A-T Children’s Project. Funds collected the night of the event through silent and live auction items, as well as cocktail sales and donations, will benefit Charlotte’s Medical Management Fund.
While the event is sold out, auction items, sponsorships and donations for Charlotte’s Medical Management fund are still being gratefully accepted. For further details email charlottescure@gmail.com
“This will cover expenses, whether it’s travel, cost of treatment, therapies, equipment, anything,” Courteny said of the Medical Management Fund. “Anything that she could possibly need. So, we set up that account and the auction items and other things from that night, will go toward that medical management fund.”
When asked what Charlotte loves, her mom stated princesses and super heroes. Her favorite super hero happens to be Chase from Paw Patrol. When turning to the internet for information about the German Shepherd puppy it’s stated: “A natural leader, he has a can-do attitude, “by the book” approach. No matter the mission, he’ll sniff out a solution. And when it comes to solving mysteries, he’s the best.” A description which would also be befitting of a ‘Cowboy Capital Super Hero’ who’s simply out to live her best life – Charlotte Schmitt.
For those interested in following Charlotte’s story or learning more about A-T, visit Charlotte’s Cure on Facebook and Instagram.
