McCall was born happy and healthy in 2018 as the first of our two children. The day she turned four months old, she had her first seizure while at a well visit with her doctor. A week later she had another one, and since then she’s had hundreds of seizures that have stubbornly resisted countless rounds of medications.
In 2020, at two years old, McCall had up to ten seizure medications in her system at one time while convulsions and status epilepticus persisted in her tiny body. She had to be put into a medically induced coma to give her brain and body rest. I was eight months pregnant, and only one parent could be in the hospital at a time [due to Covid 19]. There are no words to describe the emotions we met as we watched our baby being put into a coma to try to stop the havoc on her body, while patients around us were being intubated and never going home. The unknown and complications from the intubation were devastating. Fortunately, she was able to come out of the coma days later without subsequent seizures, although there were significant side effects and challenges that followed.
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. We are immensely thankful that McCall has been able to regain those motor functions and the ability to swallow thin liquids. You wouldn't believe how much this improved all of our quality of life.
McCall continues to struggle with fine and gross motor function, behavior, sensory needs, and is delayed mentally as well as in speech. However, she is an absolute joy and works very hard each week! She loves going to her therapies, which include Speech, Physical Therapy, Occupational Therapy and, Applied Behavioral Analysis (ABA) Therapy. She has even recently been able to start the first grade through medical homebound school!
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 with peers, be in crowds, or participate in activities that her neurotypical peers are involved in every day. She requires 24/7 monitoring, and we still grapple with the reality that she is 10x more susceptible to Sudden Unexplained Death in Epilepsy (SUDEP) than those with less severe types of epilepsy.
For these 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 ours, 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!