2026 Update
Since the 2024 Gala, our journey with McCall has continued to hold both progress and profound challenges.
This past year brought one of the hardest stretches we’ve faced yet — including a month-long hospitalization that tested every ounce of strength our family had. Watching your child fight battles you cannot fight for her is something no parent is ever prepared for. There were long nights, difficult conversations, and moments that felt impossibly heavy.
But there were also victories. Stable days. Deep breaths. Small but meaningful steps forward.
McCall is a brave little girl with a big heart. She loves her people fiercely and is generous with the very best, melt-into-you snuggles. And music — music is her joy. The first few notes of a favorite song can light her up instantly. She sways, she hums, she smiles. In a world that can feel unpredictable, music gives her rhythm, connection, and peace.
Dravet syndrome remains part of our daily reality. Seizures are still unpredictable. Monitoring never stops. The risks are still very real.
But so is hope.
McCall is currently participating in a groundbreaking clinical trial that feels like a meaningful step in the right direction — a glimpse of what may be possible. We are deeply grateful for the researchers, clinicians, and advocates who are pushing the science forward.
Still, one trial is not enough.
We need transformative treatments for every child and adult living with Dravet syndrome and related epilepsies. We need therapies that extend life expectancy. We need solutions that improve quality of life now — not someday. And ultimately, we need a cure.
Progress happens because people decide it matters.
And this does matter.
When McCall curls up in our arms after a long day…
When she lights up at the sound of her favorite song…
When she reaches for her sister’s hand…
We are reminded exactly what is at stake — not just for her, but for every child and adult living with Dravet.
Their futures.
Their joy.
Their safety.
Their lives.
We invite you to be part of the reason those futures look brighter.
To invest in the science that changes outcomes.
To give your time, your resources, your voice, or your prayers.
To help accelerate breakthroughs that bring longer lives and fuller lives within reach.
Because children and adults with Dravet are not statistics.
They are brave souls with big hearts, deep love, and immeasurable worth.
And they deserve more.
Together, we can move closer to transformative treatment for all — and one day, a cure.
2024 Story
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 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, 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 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. 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.
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.
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.
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!