MEMPHIS, Tenn. — Like most 5-year-olds, Elle Gieselmann loves to giggle and watch “Frozen.”
“Usually, she’s bouncing off the walls everywhere,” said her mom Dana.
But unlike others her age, Elle comes to Le Bonheur Children’s Hospital every two weeks.
She has a rare terminal brain disease called Batten. It causes seizures, speech problems and an inability to walk, see and even eat.
“We just don’t know what tomorrow’s going to look like.”
The Gieselmanns live in Memphis and brought Elle to Ohio last year for a clinical study for Batten. She’s been getting treatments with a newly FDA-approved drug ever since.
“We’ve definitely seen the progression [of the disease] slow. I would say if it was going 90 miles per hour, now it’s at three to four miles an hour,” said her dad Frazer. “She’s a happy kid, so we’re going to do all we can to fight for Elle.”
He says Elle’s older sister, Milla, also had Batten disease and died from it last year.
He says community support’s been a huge aid in what they’re going through, but so has the small group of other parents sharing this journey — which brings us to the McCorkles from Louisiana.
Their 5-year-old Micah also has Batten disease.
“He was two-and-a-half when he had his first seizure and three-and-a-half when we got the official diagnosis,” said Misty McCorkle, Micah’s mom.
They became friends with the Gieselmanns while doing that same clinical trial in Ohio.
“It’s definitely comforting to have someone you’re in the same walk of life with,” said Matthew, Micah’s dad.
The two families haven’t seen each other since last summer because they live in different states and the McCorkles go to Houston for Micah’s treatments, but Hurricane Harvey changed all that.
“’I don’t really know what to do,’ was my initial thought,” said Misty.
Misty said they didn’t know what missing a treatment would do to Micah’s progress, but luckily the drug company set them up with Le Bonheur — and put them right next door to some familiar faces of the Gieselmann family.
The McCorkles are staying at the FedExFamilyHouse until these storms die down and they can drive back to Louisiana.
The two families already have plans to grab dinner and catch up while in Memphis.
“Just enjoy the time you have with your kids and don’t take them for granted and spend every moment just loving on them and knowing they’re a blessing,” said Matthew.
While WREG’s Bridget Chapman was covering this story, Le Bonheur got put on lockdown for a tornado warning.
“Doctor Storm” started going over the intercom, which is code for move to a safe spot.
Everyone was moved to the hallway until the tornado warning expired. And when everyone was in the hallway, Elle and Micah wanted to be next to each other and reached for another.
It brought tears to one employee’s eyes and was also a great moment for their parents.
“It was really good to see them interacting,” said Misty. “When we were in Ohio, they did those type of things, so it was really nice, really refreshing to see them still be able to interact in a way that they can.”