CHARLOTTE, N.C. (WBTV) - You guys know every September is “Pediatric Cancer Awareness Month.” I appreciate highlighting kids who live, fight, battle, and sometimes beat, pediatric cancer.
But September is also something else that doesn't get as much attention -- but it's something affecting kids in our community, including 14-year-old Madeleine, seen here, from Indian Land, South Carolina.
Madeleine's mom, Courtney Crowell, wrote months ago. I didn't get a chance to highlight Hydrocephalus and Chiari Malformation Awareness Month then, but would love to make it up to her and her beautiful daughter by writing about it now.
Madeleine was born with Hydrocephalus. This means she had an increased amount of cerebral spinal fluid within her brain’s ventricles.
Years later in elementary school, Madeleine was also then diagnosed with Chiari Malformation. With this brain malformation, the brain tissue of the cerebellum is pushed through the opening of the skull and into the spinal canal.
“Each child’s development, symptoms, and deficiencies are unique to them,” Courtney says. “Headaches, brain pressure, learning/cognitive/developmental delays, walking instability, and nausea are common. Madeleine suffers from chronic headaches and memory lapses the most.”
As we say with all of our #MollysKids, illnesses don’t define a child. Madeleine also loves to play softball, watch hockey, and is a talented artist.
“She’s amazing,” her mom said. “I am proud in many, many ways.”
A year-and-a-half ago in July of 2018, Madeleine had ETV surgery to fix her headaches and thin optic nerves. This stands for Endoscopic Third Ventriculostomy surgery. That's a surgery to drain extra fluid from your brain.
Sadly, Courtney said, it failed.
“Failure isn’t that uncommon,” she added. “Sixty-to-90-percent of ETV surgeries fail within a few months. Madeleine’s symptoms grew worse and she developed new symptoms, so she went back in May of 2019 for a revision surgery.”
At this point, Courtney said she could write a book with how she has learned about brain malformations, and about how much her family has been through.
“There aren’t any cures for these brain anomalies, but research and awareness are growing,” she said. “No one really knows what comes next.”
Meaning... Madeleine doesn’t know if she needs any more brain surgeries (though her mom prays she won’t). They don’t know what host of potential issues may arise in the future. But, both women are hopeful. They say they trust organizations racing against time to formulate successful treatments and cures.
“If you don’t have hope, you have nothing,” Courtney said. “We’d just love a little attention to these lesser-known illnesses affecting kids in the Charlotte-area.”
It’s long past September, Courtney. Better late than never. Hopefully this helps you guys gain a little attention.
*Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.