When the Bassett family held their beautiful daughter, Elee, shortly after her birth, it was inconceivable that a cellular anomaly within their precious child would soon become the source of difficult medical challenges. With a sustaining faith, they hope for her healing while seeking solutions to enhance Elee’s life. The Lexington community can help answer their prayers and love this tiny neighbor by supporting their cause.
Eleanor (“Elee”) Bassett, a friendly toddler who lives in the local community, insists on engaging with everyone she meets. “She wants to give everyone big hugs,” says her mother, Hilary. “If you ignore her, she just keeps saying, ‘Hey!’ over and over, and when we’re in the grocery store, she makes everyone stop to talk to her.” Elee’s love of people is only seconded by her natural affection for dogs, especially her family’s pets, Zappa and Allman. “She starts every single day with giving the dogs a big hug,” she adds. “I’ve never met another kid like her that is not scared of anything—she’s fearless,” Hilary says. “Elee climbs up on everything. She’s constantly getting into things. Our entire house is kind of turned into a jungle gym. We have slides in every single room now where she climbs up and slides down.”
Before birth, Elee’s prenatal progress was textbook-typical, and first-time parents Hilary and Eric Bassett joyfully welcomed their newborn daughter into their family on January 21, 2022. As an infant, Elee seemed to be healthy and thriving, and Hilary returned to her position as a head compliance administrator in the healthcare sector.
On October 23, 2022, Hilary, along with her mother and Elee, was traveling to a work-related conference in Nashville, and while driving through Atlanta, Hilary’s mother sensed that something was not quite right with Elee. Immediately, Hilary pulled into the breakdown lane, and upon a closer examination, the pair discovered that the child was unresponsive and breathing erratically. After they called 9-1-1 and initiated CPR, Elee began to have visible seizures. The ambulance was delayed because of traffic congestion, and when it finally did arrive, they were transported to a small hospital where the medical care Elee received was subpar. As Hilary recalls those harrowing memories, she describes that event as “a nightmare from beginning to end,” “a super traumatic day,” and “probably the worst day of my entire life.”
Elee was soon transferred to a larger children’s hospital in the Atlanta area. “By the time we got to that hospital, she was coding,” Hilary says. After she was stabilized, she was in PICU while they tried to figure out why they couldn’t stop her seizures and what was causing them. “We had prenatal screening like everyone else does to check for the more popular chromosomal abnormalities, and everything came back normal,” she says. Food allergies were considered, and multiple medication regimens were prescribed, but the cause of the seizures could not be immediately identified, and Elee’s condition did not improve.
Fortified by her vocational expertise, Hilary was able to navigate the many challenges they faced. “They transferred us to MUSC [Medical University of South Carolina], so we could be closer to home, closer to our family,” she says. Once there, “We did even more trials and more medication regimens, just trying to see what would happen and failed.” The tables finally began to turn when Elee was introduced to the keto diet, in addition to several anti-seizure medications. “The keto diet [i.e., foods with high fat and low carbohydrates] was actually started to treat epilepsy 100 years ago,” explains Hilary. Finally, 39 days after her emergency admission, Elee was released to return home with her family.
While at MUSC, genetic testing was done by the Mayo Clinic, and they discovered that Elee has a deletion on her fourteenth chromosome. An update from the clinic in June of 2023 specified that Elee has a condition called Ring 14, a very rare syndrome that is caused by a rearrangement of one of the chromosomes in the cells of her body. “Ring 14 is not what we wanted for her,” Hilary says. “We’re the only people in South Carolina that are dealing with it. There are only 23 families in the whole United States that are going through this. Elee’s the youngest one.”
“We cherish every single moment with Elee,” she adds. “The biggest blessing of this diagnosis is how much closer my family and Eric’s family have been able to get and how much more we’ve been able to lean on God to help us through this.” “We are stressing that we’re not putting Elee into a box,” Hilary continues. “We know that every kid is different, and we are praying and hoping that God can heal her. We don’t want to set any restrictions on Elee or have any expectations of how far she can go—just trying to make sure that she has all the resources and gets every therapy and every treatment that is available for her, so she has the best possible chance.”
Elee’s opportunities to thrive would be significantly enhanced if her seizures could be eliminated, and adding another special strategy to her current treatment plan could make a monumental difference. This unique assistance would be provided through the superpowers of a canine companion known as a seizure-alert service dog, an animal specially trained to detect and inform that a seizure is about to happen so that emergency medications can be administered as quickly as possible. According to her mother, Elee has “refractory epilepsy,” which means the seizures can only be stopped with medication. Also, these events occur while she is sleeping and without convulsions. Because of the latter characteristic of her seizure activity, market detection devices will not work for her.
A seizure-alert dog, however, could possibly notify the family when the seizures are about to happen, and being able to stop them before they start would mean reducing the potential brain damage that they can cause. “Hopefully,” Hilary says, “we get this dog and Elee never has another seizure again—that would be the best-case scenario.” The reputable company the Bassetts have carefully researched and chosen to achieve this goal is 4 Paws for Ability, a specialized dog-training organization based in Ohio. Because these service animals require complex instruction specifically tailored to the needs of the recipient, the family must undergo a strenuous application, interviewing, and training process. Additionally, the canine must be reserved with a $20,000 deposit, and after that payment is secured, the breeding and schooling period—which may last for two-and-a-half years—will begin.
The selected dog, usually a golden or Labrador retriever, will first be coached as a basic service animal. During that period, the canine will also be exposed to the clothing that Elee has worn during seizure activity to memorize the accompanying scent. Next, the dog will be taught to respond to Elee’s daily needs, and then the family will attend in-person intensive training sessions with the animal in Ohio. Once the canine has been adopted into the Bassett’s home and has established a routine with Elee, there will be follow-up “continuing education” indefinitely, so that the animal maintains these skills. “It’s a very extensive, lifelong commitment,” says Hilary.
In response to this need and their love for Elee, the community is rallying around the Bassett family by participating in fundraisers that will help them adopt this service animal. The Paws for Elee Facebook page and pawsforelee.com website share information about upcoming fundraising opportunities. Additionally, “Craig Regan designed an exclusive Paws for Elee shirt that we are selling in their store [and online],” Hilary says, and “Cola Stacks, is launching a Paws for Elee bracelet this fall.” Because November is national epilepsy month, Elee’s family is hosting a 5K race, and one-mile fun run/walk on November 4, 2023, at Saluda Shoals at 8 a.m. “We’re hoping to get the different epilepsy groups to help us and support us,” Hilary says. “It’s a family-friendly event,” she adds. Strictly Running is timing the activity, and strollers and well-behaved dogs are welcome to be a part of the race. Their website and Facebook page provide more information about how to financially sponsor the event and/or register as a participant.