On December 22nd, 2008, Bethany Joanne Childers took her first breath as she came into the world, forever making it a better place. She was Abby and Todd's first and only daughter, and little sister to brother William. She was tiny, beautiful, and perfect, and in those first few months, there were no signs of what was to come.
At around 6-months-old, Bethany was a little behind in her development and Abby was told that Bethany had low muscle tone. However, once she began physical therapy Bethany took off and was right on track with all her milestones.
Then one day, when Bethany was 11-months-old, she was at home, playing peekaboo with her mom, when out of nowhere she had her first seizure.
Over the next 11 years, 5 months, and 8 days, Bethany would fight a catastrophic form of epilepsy, that would later be diagnosed as Dravet Syndrome. Over those years, Bethany experienced thousands of seizures, along with countless doctor visits, therapy appointments, intubations, and EMS trips. Bethany's seizures worsened as she got older, which not only impacted her neurologically, but also took a significant toll on her GI system as her brain was no longer telling it what to do.
For over a year, Abby researched alternative therapies that could potentially help alleviate Bethany’s seizures. She found compelling information on CBD oil and watched videos showing CBD help another child with a similar diagnosis to Bethany. The only problem was, this child lived in another state, and, in 2015, CBD was not yet legal to use in the state of North Carolina. In order for Abby to obtain this for Bethany, she would need to get on a waiting list and then fly to Colorado. To this day no one knows how Abby obtained the CBD oil, but she did.
When she came home, Bethany was not doing well. She was placed on TPN, which is a way of receiving nutrition through an IV, and entered hospice care at home. Abby and others had started the process of legalizing CBD for medicinal use in NC. However, Bethany continued to decline and one night, Bethany's father, Todd, proposed that they just try giving her the CBD. They both agreed that, at this point, they had to try whatever they could.
Abby knew in her gut since the day she discovered CBD that it would work. She never thought that CBD would cure her daughter, but all she pleaded for was more time. Bethany was given a dose that night and within 24 hours her body relaxed and stopped shaking. 48 hours later, Bethany started producing urine without being catheterized by nurses, and 72 hours later she sat on the side of her bed and said, “Hi Keith”, to a radio talk show host named Keith Larson.
Bethany continued to thrive, so much so that when she went back to school she was put in a mainstream class. Bethany left a mark that year on her school. She showed teachers, administrators, therapists and students that you should never take a day of your life for granted, be grateful for good health, and always thank God for another day.
That year, in her kindergarten classroom, Bethany met Stella Queen, a very special little girl who would go on to become Bethy’s best friend, and later who she would call her sister. Stella took care of Bethany in school, but they helped each other in different ways and had a love for one another that was fierce. As Stella got older, the differences between the two girls became more pronounced, and Bethany moved to an Exceptional Children’s class. In spite of this, the two became closer than ever and Bethany was able to take Art, Computer Science, and Library Science classes with Stella and even had gym class with Stella’s older sister, Lily.
As time went on, Bethany started regressing and her seizures became more serious and consistent. Abby and Todd searched out all options, but Bethany wasn't a candidate for brain surgery because the seizures were coming from all areas of her brain, not just one place that could be removed. Yet through it all, Bethany had an enthusiasm and love of life that was contagious and could not be matched. She wanted to experience all life had to offer and never complained about the many obstacles she had to face. She loved turning up the music to show off her sweet dance moves (including “shaking her booty”, which she thought was quite hilarious to say), and, of course, having play dates with Stella.
She loved talking to people and wanted to speak to everyone she passed by. She would ask them questions about their life, compliment what they were wearing, or even ask about they were eating (she LOVED food!). She never met a stranger. At recess (and really, in life), Bethany was the leader. In second grade, she led groups of fourth grade, neurotypical girls around the playground, who would be hanging onto every word she said, fully invested in Bethany’s imaginary games. At home, she did similarly, persuading brother William to play all things girly. That is, until she discovered his nerf guns. From that day forward, as long as B was stable and feeling up to it, they would have a nightly nerf war, which, of course, she always won.
After many ups and downs, and defying the odds at each turn, Bethany’s gut health continued to decline and she and her parents were back to where they had been in 2015. The options were either to undergo a several-hour-long surgery to create an ileostomy, or to do nothing, with the chance that the extreme bloating and pain in the gut could be bad enough to trigger a huge seizure that she would not make it through. Abby and Todd decided to move forward with the surgery and on May 20, 2020 Bethany was admitted.
Miraculously, Bethany made it through the surgery and was doing well. However, two hours later, Abby was helping Bethany sit up and she went into the biggest seizure that, at the time, Abby had ever seen. After hours of doctors working on her and doing all they could, Bethy was intubated. Bethany was unconscious for days and no one knew if she would wake up and if she did, what her "new normal" would look like.
Several days later, in total Bethany fashion, she self-extubated and immediately asked for pizza! Everyone praised God and thought they were headed home. However, a few days later it happened again and from there would happen two more times. The last time B stayed intubated for weeks. The family met with all the doctors who felt like this was the end and they agreed to pull her off all supports. Again, Bethany defied all the odds and woke up and was even breathing on her own.
Things were definitely different though. Bethany wasn't able to metabolize her medications through her GI tract anymore and everything had to be given IV. Some medications even had to be changed because they were not available in IV form. This led to a new battle over whether or not Bethany could be safely discharged home on this many IV medications.
Abby put up a pretty big fight that they could handle this at home and agreed it was unconventional, but when had anything ever been done the conventional way with Bethany? Finally, after spending the summer in the hospital, Bethany was able to come home on July 24, 2020. She was the first child sent home on more than 5 IV drugs that had to be infused multiple times a day. Abby's brother worked tirelessly to convert Bethany’s bedroom closet into a hospital-level medication room, as safety was of the utmost importance considering the type of drugs, the dosages, and the frequency were not typical for home health care. Bethany was so happy to be home and to see her “Prince Charming” (aka her brother William), as he had not been able to see her in the hospital due to the Covid-19 pandemic. However, B still had a long way to go to learn to sit up, stand, and walk on her own again. At the time, physical and occupational therapists were only doing Zoom visits and were not able to come in person to patient’s homes. However, with the help of her family and her nurse, Chloe, Bethy was able to start walking again. Bethany knew what she wanted and if she wanted to do something, she was going to do it! She was fearless.
In December, Bethany was hospitalized for a blood transfusion where she had three seizures that sent her home on hospice once again. The hospice company didn't think she would make it through the weekend, but Abby did not believe this was the end for her daughter. Bethany spent the next few months in a good bit of pain, and was sleeping much more than before, but she still wanted to play whenever she had the chance and overall, she was stable. The hospice company dropped Bethany as they thought she didn't need it anymore. However, several weeks later Bethany was picked up by another hospice program. Bethany's pain had started to increase and Bethany stated she was tired. Bethany was finished. The Lord was ready to bring this angel sent to earth back home. Abby knew that this time, this was it.
Over the next several weeks Bethany started to carry out her final wishes. Stella came for an epic sleepover and her family came for one heck of a pizza party and boy did they party. Bethany's Nana had a party for her at her home in South Carolina where she had built a big flower garden named Bethany's Butterfly and Flower Garden. Bethany lived for flowers and butterflies. She couldn't get enough of them. Bethany had all of her favorite foods and people stop by to give her a hug. That evening Bethany's parents took her home where Charlotte Mecklenburg Fire Department Station 12 met them and transferred her back to her bed. That night Abby knew they were nearing the end and friends and family were battling with whether or not this was really happening, as Bethy had bounced back from the impossible so many times. The following day, May 2, 2021, Abby's godmother, also known as "Jean Jean", came to visit and prayed over Bethany before leaving. About 15 minutes later B called for her mommy and Abby sat down beside her. Bethany told her mom that she wanted to ask - as she calls him - "God Jesus" into her heart. Abby was floored and called to ask if it was a discussion Jean Jean had with her. She said no and that B was asleep. Abby was blown away at how Bethany could grasp something like that. Bethany was wickedly smart and they often joked that Bethany really was playing them all for fools. Abby looked at Bethany and told her to repeat after her and Abby led her daughter through the prayer. It was a moment that Abby will cherish forever. Throughout that week, Bethany had visitors such as her Pastor, teachers, friends, and Principal come by to see her. On Friday evening Stella came in to give her best friend the last kiss and hug she would ever give her.
On Saturday May 8, 2021 at 9:50 in the morning with Abby holding Bethany close to her chest, with her mom’s wedding ring on her finger that she had requested to wear days earlier, her precious little hand wrapped around her daddy’s finger, and with her grandparents, godparents/Aunt and Uncle, her “Prince Charming” brother William, and her nurse Chloe by her side, Bethany Joanne Childers took her last breath.
We have included a few videos for you so you too can have your life changed by this precious soul.