CULLMAN, Ala. – On March 26, Purple Day, Ellie Mae Long dawns her purple clothes as a testament to her resilience, hope and triumph over the long battle against epilepsy. Her journey from constant seizures to being seizure free is a beacon of hope for many in the epilepsy community grappling with this challenging condition.
Ellie Mae’s battle with epilepsy began from her very first day of life, though it was months before the seizures she experienced were identified as such. Her parents did not know at first what they were, but they quickly evolved into something much more dangerous.
Diagnosed with complex partial epilepsy at just 5 months old, Ellie Mae and her parents, Maeghan and Stephen Long, embarked on a daunting path filled with medication trials, countless doctor’s visits and an array of medical tests, all in search of a solution that seemed elusive.
Numerous medications became the cadence of Ellie Mae’s life, at one point becoming as many as three a day. Despite their efforts, Ellie Mae’s condition intensified, escalating from five to seven seizures daily to an overwhelming 52 in a single day. Countless EEGs, PET scans, MRIs and other acronyms became their family compass, though they always seemed to lead them to a new dead end. Ellie Mae’s condition remained a mystery, one that would later be revealed within the folds of her young brain.
Ellie Mae and her mother Maeghan in the process of the many tests that would become a pivotal part of Ellie Mae’s early life. (Maeghan Long)
Desperation would lead them to what can only be considered as no mere coincidence, to the very doorstep of Stephen Long’s cousin, Noah Hutson. Hutson is an epilepsy research scientist based out of Phoenix, Arizona, with an extensive background in epilepsy treatment and research. Hutson would be the guiding factor in leading them to the place of Ellie Mae’s miracle, the Cleveland Clinic in Cleveland, Ohio.
In May 2021, Ellie Mae and her family made the long trip to the Cleveland Clinic. More tests that had been so routine in Ellie Mae’s life commenced in a search for as much information as they could pack in the week Ellie Mae was scheduled to be there. Eventually, the conclusion was the same as the doctors had determined before. For them to take the next step of giving Ellie Mae the quality of life that they desperately sought, Ellie Mae would need to undergo a procedure that was extremely taxing on the brain and skull of a 3-year-old child.
After much prayer and a thousand what-ifs, Maeghan and Stephen Long would sign the papers slating Ellie Mae for the procedure on July 2, 2021.
The clinic proposed a daring procedure, an SEEG, or stereoelectroencephalography, that required venturing into Ellie Mae’s brain to pinpoint the precise location of the seizures. The procedure would require shaving the left side of Ellie Mae’s head and drilling 20 holes in her skull to allow access for them to place the electrodes from the EEG onto the surface of her brain. It would then become a waiting game, patiently waiting for a seizure to take place for the doctors to track it back to the source. Before the SEEG could take place, Ellie Mae underwent an extensive MRI, one that took two hours to complete to ensure the doctors had planned the right routes for the electrodes to not hurt her during surgery.
In an emotional whirlwind, a discovery on the eve of her scheduled surgery turned their despair into hope.
“This is the day I’ll never forget. Ellie and I were playing downstairs and I heard running footsteps. Stephen was running toward me with tears in his eyes on the phone with Noah. He just started screaming at me that they found the lesion! We were in complete shock. A tech looking over Ellie’s MRI found something he followed on a hunch and it ended up being what they thought was the lesion hidden behind a fold in her brain,” Maeghan Long shared, reflecting on the emotional moment that forever changed their lives.
Less than 24 hours before Ellie Mae would undergo the original surgery, a 26-year-old technician would find the lesion causing her seizures, where it had escaped doctors before. In less than 24 hours before that same surgery, Maeghan and Stephen Long would sign consent for a left frontal lobe craniotomy in hopes that the doctors could remove the spot found by that technician.
On the day of Ellie Mae’s surgery, she awoke with a cough that threatened to complicate the surgery. Doctors gave the Longs a choice: move forward with the chance of a more difficult recovery or postpone and potentially miss this window of hope.
In a moment heavy with uncertainty, Stephen Long’s decisive “Let’s do it now” echoed the depth of their courage. As Ellie Mae was wheeled away, the Longs spent an incalculable amount of time crying together, before they left to wait some more.
Five hours later, a call over the intercom shattered the tense atmosphere — the surgery was a success. The lesion, once a mystery settling on her brain, was revealed as a tangible gray and rubbery mass, distinct from the healthy brain tissue surrounding it. All of the pain, tears and long-winded what-ifs would end with the most hopeful set of words that every parent in this situation dreams of, “I think we were right. I think we got it all.”
Within 48 hours, the Longs, with Miss Ellie Mae in tow, were headed home.
Today, Ellie Mae celebrates July 2 as a second birthday, the day that granted her a seizure-free life. In year one of that anniversary, Maeghan and Stephen Long took her to Disney, a place where she could be a princess among the many that she looked to as heroes in her life and journey.
Ellie Mae Long on her first “second birthday” anniversary at Disney, celebrating her first year seizure free. (Maeghan Long)
“July 2 is a day that forever changed our lives, and we will be eternally grateful that God saw fit to put Noah, Cleveland, Redeeming Grace Church and so many others in our life,” Maeghan Long said. “My mom and nanny, who have both now passed, were Ellie’s biggest fans. They prayed for her harder than anyone and loved her like no one else could. I’m so thankful they both saw her be seizure free and that my mom got to see her be medication free for a week before she passed. It’s all they ever wanted.”
The journey through epilepsy has empowered the Longs to reach out to others facing similar battles, sharing their story of hope and resilience. Ellie Mae’s experience underscores the unique nature of epilepsy and the ongoing struggles many families face. In sharing their story, the Longs advocate for awareness and support for those affected by epilepsy, celebrating the victories while acknowledging the ongoing fight against this complex condition.
Ellie Mae Long, Maeghan Long, Stephen Long and little sister Gracie Abbot Long pose for a family picture, as Ellie Mae is now nearly three years seizure free. (Maeghan Long)
On March 26 of each year, Purple Day serves as a day of awareness for epilepsy and the many testimonies and struggles seen within that community. The Longs challenge everyone in the community to wear their purple on that special day, to advocate for those in the midst of this hard journey.
Ellie Mae Long’s testimony is a powerful reminder of the possibilities that lie in deep-rooted faith, medical innovation and community support. It’s a testament to the power of prayer, especially for those that come from grandparents with a desperate wish to see their grandchild seizure free. Ellie Mae’s story is a beacon of hope, demonstrating that even in the darkest of times, there is always a light to be found.
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