McCall’s Journey

McCall was born August 28, 2018- perfectly healthy, without any complications. Four of the sweetest months later, still nestled in her car seat at her well check appointment, her arm began to rhythmically bounce up from her lap and fall back down. Her pediatrician immediately, but charily, slipped out of the room to call the emergency department at the local children’s hospital. It seemed as though the walls were closing in on McCall’s mother when the doctor reappeared to tell her that her baby was having a seizure and an ambulance was on the way.

After spending New Year’s weekend in the hospital watching little McCall undergo a battery of unrelenting tests, no glaring cause for her seizure was found and her parents were hopeful that this would be a one-time occurrence. Overwhelmed but relieved, they went home with a rescue medication to use on the off chance that she would have another seizure. She had one a week later and more than 20 seizures before she was 11 months old.

The episodes typically lasted between 5 and 10 minutes with the longest lasting 22 minutes. Months of inconclusive EEGs and evaluations failed to reveal a cause for McCall’s seizures, which resisted multiple anti-seizure medications. This prompted her neurologist in Atlanta to refer her to Le bonheur Children’s Hospital in Memphis, TN to see an epileptologist for more specialized testing. McCall spent more than a week under the care of Dr. James Wheless and his team, completing every possible test for her vague condition – including withholding her meds to induce a seizure in order to finally catch one on an EEG. Then, her genetic test results finally arrived; they revealed what the constant monitoring and ample evaluations from the days before could not: McCall was diagnosed with a mutation of the SCN1A gene. [… it is worth noting that Dr. Wheless happens to be one of the few specialists in the country for this specific type of epilepsy.]

One day, it was thought that McCall may have childhood epilepsy, which children often grow out of- hope and joy filled her spacious hospital room. The very next day, genetic results catalyzed the opposite of the hopeful day before- her parents were then so near hopeless that few words were spoken for the remainder of the day. McCall would not outgrow her epilepsy and it was likely that her condition would get worse. Her medical team urged the family to not solely look at the worst-case scenarios, as the SCN1A gene mutation has a spectrum of diagnoses ranging from febrile seizures to Dravet syndrome. The epileptologist also planted hope in the Wrights once again, as he explained briefly that there were studies being conducted to come up with a treatment for this precise type of epilepsy. Prayers were shifted to specifically lifting up the teams of people who would make this CURE come to fruition in McCall’s lifetime.

Since that first visit to Memphis, McCall has been diagnosed with Dravet syndrome, received ongoing therapies in PT, OT, Speech and Feeding, and participated in two medical trials for Dravet syndrome. Her parents lost count of the hospital visits, but one will remain vividly engrained in their memories. In May of 2020, 3 months before her second birthday, McCall was put into a medically-induced coma to stop clusters of seizures that had persisted for hours- this type of episode is called status epilepticus, something many Dravet families are far too familiar with.  

Fortunately, days later, McCall’s status seizures stopped, and her brain got the rest that it needed for her to be successfully extubated without subsequent seizures. Though her family was elated to see McCall start to resemble the little girl they knew again, this episode and intubation left damage that has yet to heal even two years later. McCall did not have the strength to sit up, walk or talk initially and these skills remained weak or absent when she was discharged. She was also unable to swallow thin liquids. To this day, every liquid that she consumes must be thickened in order to prevent silent aspiration, which could result in life threatening lung infections. Even her multiple medications must be thickened before she takes them three times a day.

Despite her disease and that life altering, perspective changing PICU stay, McCall continues to be an absolute joy to everyone around her. With a lowered immune system due to Dravet syndrome and her inability to be vaccinated (a seizure trigger for her), she does not participate in most physical or social activities that her 4-year-old peers do on a regular basis. However, her laughter and full faced grin are enough to make even the darkest day bright for the close family, friends and medical professionals that she does get to encounter.

McCall’s parents would like to encourage families who are faced with epilepsy to first, have genetic testing done as soon as possible and second, though it isn’t an easy path to walk, keep seeking and using resources built to help you on your journey. Though McCall was not diagnosed specifically with Dravet syndrome until her condition progressed, the Dravet Syndrome Foundation has played an integral part in supporting and educating her family since they received the SCN1A mutation diagnosis. There is hope and life after a Dravet syndrome diagnosis. This community is built to help you navigate every stage of the process.

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