SIOUX FALLS, S.D. (KELO) — We recently brought you a story on a 2-year-old Brookings girl battling a rare and fatal genetic disease.
Sloan Murfield was diagnosed with Batten Disease on January 20. According to Sanford Research, there are up to 15 different types of Batten. And in Sloan’s case, she has the most severe strain.
The news of little Sloan’s diagnosis was devastating.
“This is not something we were expecting. Obviously, we knew there was something wrong, and we were very concerned just because of how fast she was regressing with things,” Sloan’s mom Heather Murfield said.
Sanford Research has a team looking closely into Batten Disease and some of its different types.
“Every child manifests this a little bit differently. All children are different. I can’t emphasize enough that Sloan is a unique individual, and her journey will be not the same, necessarily, or as severe as other children. We still don’t know as much as we need to know about this disease,” president of Sanford Research David Pearce said.
Pearce says Batten Disease is a group of different diseases where a genetic defect affects the brain.
“Brain cells don’t communicate effectively. Think about it, you’re trying to drive a car and you don’t have a steering wheel, for example. There’s no coordination there within the brain in terms of how cells actually work together,” Pearce said.
Pearce says with that lack of communication, those cells start to die.
“As you’re learning to do something, you unlearn the ability to do something,” Pearce said.
Which can include daily tasks such as walking, talking or the ability to see. Additionally, Sloan’s diagnosis is rare and fatal.
“I’ve been here at Sanford for 13 years now, and this is only the second child I’ve known to have CLN1 Batten Disease,” Pearce said.
Melissa Pratt is a supervisor and project manager in the Weimer Lab at Sanford Research. She says they have clinical trials for treatments and therapies for some forms of Batten.
“For CLN1 in particular, we are unfortunately a ways away from the clinic, but we are making strides and we are working everyday to find something that’s going to help,” she said.
Pratt says hearing news of a Batten Diagnosis drives the team to keep looking for answers.
“We are also in it for helping the patients. We like to see our work translate. We are always devastated every time we hear of a new child with Batten Disease. We involve ourselves with the families, we get involved with their foundations, we know these kids, and so it’s always heartbreaking,” Pratt said.
The Murfield’s say they are still at a loss for words and so thankful for the support they’ve seen from the community. They will continue to learn more about Sloan’s disease with more testing and appointments.
There are more benefits now planned for the family in addition to the GoFundMe, which includes an Ice Fishing Tournament and hairstyling class.
Here is additional information from the Murfield’s about those events:
“The OWL Lodge in Bruce, SD will be hosting an ice fishing tournament on February 25, 2023, on the West & East sides of Oakwood Lake. Every year, they chose a family or person to raise money for, and this year they have graciously chosen Sloan! Registration will be from 8 a.m. – 9:30 a.m., $80 per two person teams. The tournament will run from 10 a.m.-5 p.m. with an evening meal to follow. There will be 1st, 2nd, & 3rd place prizes as well as a silent auction and gun raffle. You have the chance to win a Springfield Saint Victor 9mm Carbine and a Springfield Hellcat Pro 9mm. Tickets for the raffle are $20/ ticket, purchased at Brookings Radio or the Brookings County Sheriff’s Office.“
“Blu salon + spa in Brookings is planning a Big + Little hairstyling class in support of Sloan and her journey with Batten Disease. This class is for any Mom, Dad, Grandma, or Caretaker wanting to know more on how to care for, or style your little’s hair. Join us for a hands-on class to learn easy ways to style, how to use products, what brush or comb to use and when, & teaching your littles how to do their own ponytails! More details to follow! To sign 1 adult + 1 child up, call 605.692.6622!“