McCall was born happy and healthy in 2018 as the first of the Wrights’s two children. The day she turned four months old, she had her first seizure while at a well doctor’s visit. A week later she had another one, and since then she’s had hundreds of seizures that have stubbornly resisted countless rounds of medications.
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In 2020, McCall had up to ten seizure medications in her system at one time while convulsions and status epilepticus persisted. She had to be put into a medically induced coma to give her brain and body rest. There are no words to describe the emotions of McCall’s parents as they watched their two year old being put into a coma to try to stop the havoc on her body, while patients around them were being put into comas and not coming out. All of this while her mother was eight months pregnant, and only one parent could be in the hospital at a time. The unknown and complications were devastating. Fortunately, she was able to come out of the comma days later without subsequent seizures. Although, there were significant side effects and challenges following.
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After most of her hospitalizations, McCall lost basic abilities such as walking or holding her head up and was unable to swallow thin liquids for two years after being intubated. Her family is immensely thankful that McCall has been able to regain those motor functions and the ability to swallow thin liquids, as these functions make her, and her family’s lives a lot less challenging.
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McCall continues to struggle with fine and gross motor function, behavior, sensory needs, and is delayed mentally as well as in speech. She works very hard each week and loves going to her therapies, which include Speech, Physical Therapy, Occupational Therapy and, Applied Behavioral Analysis (ABA) Therapy.
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McCall’s seizure triggers include being over excited or startled, exhaustion, illness and fever. Because her seizures could be life-threatening, McCall is unable to attend school, be in crowds, or participate in activities that her neurotypical peers are involved in every day. She requires 24/7 monitoring, and her family also must grapple with the reality that she is 10 times more susceptible to Sudden Unexplained Death in Epilepsy (SUDEP) than those with less severe types of epilepsy.
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For those reasons, McCall and others like her are in desperate need of life-saving research and therapies that are on the cusp of fruition. The Dravet Syndrome Foundation not only provides resources, grants, and education directly to families like McCall’s, but it is an integral part of moving groundbreaking treatments forward. We need your help to get those treatments to everyone with Dravet syndrome and related epilepsies!