My Four-Year-Old Son Needs Brain Surgery
By Maria Sharkey
For the past year and a half, our lives have been consumed by an unimaginable reality: our 4-year-old son Julian has drug-resistant epilepsy. His seizures started off short at around 30 seconds but have now progressed to 10-12 minutes a few times a week due to his condition going uncontrolled for so long.
We have tried 14 different epilepsy medications, CBD, marijuana, special diets - you name it, we've tried it! We have sought out multiple hospitals for second opinions from specialists. Our son has undergone every surgical workup test available, and we have sent his results to numerous experts in hopes of finding a different solution.
Advocating for My Son
I've had to learn how to advocate for my son's medical needs, ask tough questions, challenge doctors when necessary, and manage relationships with multiple healthcare providers across different states. The reason I'm sharing our story today is not for sympathy - though we appreciate kind words - but to raise awareness about epilepsy and the stigma surrounding it.
Epilepsy is one of the most common neurological conditions, affecting 1 in 26 Americans and 50 million people globally. However, about 80% of those affected live in poverty-stricken countries with limited medical resources and access to affordable treatment options. Countless children like Julian are left suffering from uncontrollable seizures because of factors beyond their control, such as lack of education about epilepsy and financial barriers. It's time for society to be kinder and more understanding towards those living with epilepsy and to support efforts to increase access to proper care and treatment for all who need it.
“Countless children are left suffering from uncontrollable seizures because of factors beyond their control. It’s time for society to support efforts to increase access to proper care and treatment for all who need it.”
The Decision: Brain Surgery
I'd like to say that we are very fortunate that we have a choice. We have officially said yes to the first part of Julian's surgical workup. This summer, he will undergo a stereo EEG, where they will implant around 16 electrodes directly into his brain.
After the stereo EEG, we hope they will be able to localize Julian's seizures, map his brain, and move forward with a resection surgery to remove a small portion of his brain during the same hospital stay. What a wild thought. I've said yes, and I am sitting here thinking about how a parent decides to approve something so massively invasive as brain surgery for their young child.
However, the worst-case scenario is that they are unable to locate the source of the seizures, Julian's condition fails to respond to medication, and the seizures intensify. The implications of such a situation are daunting - what will become of him if this trajectory persists? It's an incredibly frightening prospect, but we are clinging to the options available and maintaining faith that the medical team will pinpoint the origins of these seizures.
A Complex Condition
Julian has multifocal epilepsy, meaning his seizures originate from different parts of his brain, making localization and surgery very difficult at times. The decision on whether to proceed is excruciating.
On one hand, world-renowned facilities are advising us to go ahead sooner rather than later. Epileptologists and neurosurgeons warn if we wait too long, the seizures could become uncontrollable tonic-clonic events, making surgical options more invasive and the seizures harder to stop entirely.
On the other hand, certain experts recommend patience, allowing Julian to grow bigger and stronger before such an intense procedure and recovery. They caution his resilience may be less than ideal. At 4 years old, his development and speech have already been affected by the seizures and he may not fully understand what is happening. Despite the uncertainty and fear, we must trust in our options and have faith that we are making the best decision for Julian's health.
The Weight of the Decision
As parents, the burden of this decision feels overwhelmingly unjust for us and for many families dealing with childhood epilepsy. We must weigh hospitalization rates, surgical data, expert opinions against the severe trauma our son may endure and his uncertain outcome. We have to synthesize all the gathered knowledge to make a singular, impactful choice about Julian's future
I've interviewed countless neurosurgeons and epileptologists, asking how frequently they perform these surgeries, what risks exist for infection or worsening conditions. Have they ever had a pediatric patient suffer loss of life, mobility, or speech capabilities?
After extensive research and preparation, we have armed ourselves with every quantitative and qualitative data point possible. We pored over surgical outcomes, procedure numbers, complication rates, cognitive impact findings, and more. Our knowledge was fueled by attendance at conferences, symposiums, and support groups. Yet, despite all of this information, the decision remains daunting to say the least.
A Child's Perspective
This process has been especially difficult for me personally because Julian has had no say or autonomy in this life-altering decision about his own body. While I have connected with other families going through similar epilepsy journeys, their teenagers or adult children can at least understand the stakes, purpose, risks, and potential rewards of surgery. But not Julian.
He only knows the present reality of seizures, something he can only describe as feeling "silly." His rare form of Gelastic Epilepsy causes uncontrollable laughter during seizures - a terrible experience for us as parents. Laughter is supposed to be a joyful sound from a child, but for us, it's terrifying. We never know if he's truly laughing or seizing.
Gratitude and Awareness
I will forever be grateful for having the privilege to seek multiple opinions for Julian's treatment options. Living in an area with great medical care has given us access to cutting-edge treatments like surgery. As an immigrant myself, I often think about children in other countries who may not have these resources available to them.
I am also grateful for the other warrior families who have shown empathy and shared their stories with us - the parents I have spoken to on a regular basis whom I have never met in real life, who have shared both the good and bad experiences. And for those who have not judged our little loving boy, even when he may be screaming or playing too rough due to medication changes or a long seizure that day.
This decision terrifies me. It's a constant reminder to be kind and appreciate the fragility of life. We never know what struggles others are facing. To other families facing similar struggles, stay strong, stay hopeful, and cherish every smile and laugh from your warrior child.
Our love, our ability to spread awareness, education, and advocacy will overcome any obstacles that come our way.
Check out my favorite epilepsy resources and foundations below:
The Cameron Boyce Foundation (est. 2019) honors the legacy of Cameron Boyce by aiming to cure epilepsy through funding research, education and awareness campaigns while still supporting causes that were important to Cameron.
Local Epilepsy Foundation chapters are part of a nationwide network that extend programs, services, and events to your local area. From referral assistance to support groups, they can get you the help you need.
Epilepsy Advocacy
Detailed information on all aspects of understanding and living with epilepsy can be found on their website
Provides information for parents/caregivers on epilepsy and seizures. Topics include children with epilepsy in school, diagnosis and treatment, how to support children with epilepsy, symptoms, causes and treatment, ketogenic diet, tips for parents, seizure first aid, seizure medications, seizure safety, SUDEP, and more.
Seizing Life® is a CURE Epilepsy podcast and videocast aiming to inspire empathy, offer helpful stories, and give hope as we search for a cure for epilepsy. Listen as guests share stories and insights on living with and battling epilepsy.
Information on research, funding opportunities, webinars, clinical trials and other epilepsy information can be found on their webpage.
Information on epilepsy and SUDEP
Information, webinars, and grant funding for seizure detection and seizure prediction devices - as well as other technologies
Provides information for parents/caregivers on epilepsy. Topics include signs and symptoms, causes, treatments, outlook, related disorders, research, and more.
About the Author
Maria Sharkey is a special education advocate and educational consultant with extensive expertise in the 13 Categories of Disability under IDEA Law. She has successfully represented clients throughout Florida and many other states. Maria is a passionate advocate for the disability community, with a particular focus on autism and epilepsy. Her dedication to these causes is deeply personal: as a mother of three, she has navigated the challenges of raising children with various disabilities. This firsthand experience brings a unique perspective to her work, driving her passion to ensure that every child, regardless of their abilities, has the opportunity to thrive academically and personally.
Maria's commitment extends beyond her professional work. As an ambassador for the Epilepsy Foundation, she tirelessly advocates for increased resources for children with epilepsy. Her efforts focus on critical areas such as preventing Sudden Unexpected Death in Epilepsy (SUDEP), breaking the stigma surrounding the condition, and enhancing overall understanding of epilepsy, particularly drug-resistant epilepsy. Maria works to ensure that families have access to the latest research, treatments, and support systems, making a tangible difference in the lives of those affected by this complex neurological disorder.
A proud advocate and member of the Council of Parents Attorneys and Advocates (COPAA), Maria has demonstrated a strong commitment to upholding the rights of children with special needs.
