This semester Oglethorpe students have been gaining valuable communications experience while raising awareness and funds for research into a rare form of epilepsy that affects Emerson Wild, the infant daughter of OU lecturer Dr. Matthew Wild and his wife Alex.
The layers of connection to this devastating condition has motivated the students involved in the Weltner Consulting Agency, a strategic communications firm staffed by OU students and supported by Oglethorpe, to make a difference in the national efforts to address the disease.
“Oglethorpe students are engaged and truly want to take on the world’s challenges, and in this class, they are provided an opportunity to make a big impact. This semester, helping the KCNT1 Foundation raise money for children facing this disease has been fulfilling for them, while they gained critical professional skills,” says faculty advisor Dr. Kate Keib.
Known as KCNT1 epilepsy, the disease gets its name from the KCNT1 human gene which is the source of the condition. It is caused by a mutation to the KCNT1 gene and leads to a severe form of epilepsy.
Matt and Alex Wild with baby Emmy
The Wilds’ daughter, Emerson or “Emmy” as she is known, was born on April 14, 2022. They first encountered the frightening symptoms as they prepared to bring Emmy home from the hospital just a few days after she was born.
Emmy began experiencing seizures and was admitted to the neonatal intensive care unit. She had a series of seizures for more than three weeks before she was finally diagnosed with KCNT1.
About 3,000 cases of KCNT1 epilepsy have been identified globally, making this an ultra-rare disorder with fewer than 20 cases per million people. There is currently no cure for this genetic condition, and the seizures that define it are resistant to medication.
“The most difficult thing as a parent is to see your child suffering and not being able to do anything to stop it. This disease has no cure and no long-term treatments yet. We often feel helpless. But what we can do is advocate for Emmy and bring awareness to this terrible disease in the hopes of a brighter future for Emmy and other KCNT1 warriors,” explains Alex Wild, Emmy’s mom.
Emmy’s first months were characterized by many stays in the hospital, and her seizures ranged anywhere from 10 to 50 daily. While her seizures have stabilized after many rounds of trial and error with medications and the help of the ketogenic diet, the combination of daily seizure activity and her genetic condition means that Emmy has missed almost all developmental milestones. She is unable to roll over or sit up. She has limited movement of her limbs and she can’t make eye contact. She requires around-the-clock care.
“Each day we see small changes in Emmy but we need more awareness, research, and treatment options. We’re hopeful that more and better treatment is around the corner but there is still such a need to advance awareness so that more people can be involved to hopefully one day find a cure,” shared Matt Wild, Emmy’s Dad.
Despite the extreme challenges, Emmy has been working hard to hold her head up and eat from a bottle, both significant accomplishments that only a rare few children with KCNT1 epilepsy are able to do.
The Weltner Agency is promoting the Million Dollar Bike Ride event on June 10, 2023, in Philadelphia, Penn. It’s organized by the KCNT1 Foundation and the University of Pennsylvania. The ride includes teams of participants who secured sponsorships that are matched by donors up to $30,000. The Wilds’ “Team KCNT1 Atlanta” has already secured nearly half of their $5,000 goal in pledges. Those wishing to contribute can do so online. All proceeds benefit KCNT1 research. They also have a local brewery on board which will host a fundraising event on the day of the ride.
“Every dollar helps advance knowledge and treatment so community events like this have such a big impact. Even if you don’t ride bikes, consider donating or come out to Halfway Crooks for good food and beer. Proceeds from the day’s sales are being generously donated,” invites Alex Wild.
