My collapse that day marked the beginning of another devastating chapter.

The new seizures were life-threatening, prolonged, and accompanied by symptoms that were unfamiliar even to many medical professionals. They occurred throughout the day and night and were sometimes triggered by ordinary stimuli such as light, sound, vibration, and changes in temperature.

But to understand what followed, it is important to go back to November 2020.

During my first major seizure episode, my mother had never witnessed a seizure of that length or severity. Within minutes of continuous convulsions, she recognized that something was seriously wrong and rushed me to the emergency room.

Because my condition was unusual and involved symptoms and complications that were not immediately understood, my family and I experienced an extremely difficult series of emergency room visits and hospitalizations.

I endured severe head and body pain, difficulty breathing, weakness, paralysis, ice-cold hands and feet that turned blue, and an inability to speak when my jaw became locked during seizures. We also encountered situations in which my symptoms were not believed or adequately understood.

Eventually, after bloodwork revealed important abnormalities, I received treatments including a B12 injection, potassium, oxygen, and Ativan. Later that month, I miraculously recovered and walked out of Maria Fareri Children's Hospital.

We thought the worst was behind us.

It wasn't.

On February 28, 2021, another devastating series of seizures began.

This time, the complications were even greater. I became extremely sensitive to light, sound, vibration, and temperature changes. My digestive system became intolerant of many foods, and my body became increasingly difficult to stabilize, followed by continuous diarrhea.

On March 6, 2021, I experienced one of the most horrific episodes of my life. I lost the ability to breathe independently, and my father had to provide mouth-to-mouth breathing for approximately three hours. He had to do this again during subsequent episodes.

There were also emergency room encounters that left my family and me deeply traumatized. During one ambulance transport, I heard the ambulance personnel scoff among themselves and refer to my seizures as “pseudo-seizures.” At the hospital, I was separated from my mother because of COVID-19 restrictions and struggled through a severe episode while having difficulty breathing and being unable to communicate normally. I was not given oxygen until the heart monitor began to beep loudly.

Eventually, my father found a renowned neurologist, Dr. Mill Etienne, who recognized the seriousness of my condition and began treating me. Dr. Etienne is a neurologist with subspecialty training in epilepsy and clinical neurophysiology. I was diagnosed with hemiplegic migraines with seizures, along with other conditions identified by additional specialists.

Finding answers, however, did not mean the struggle was over.

For years, I remained extremely ill and experienced significant difficulties with medications and treatments. My family sought care from specialists in different areas of medicine, including functional medicine, where extensive testing revealed additional conditions that complicated my health.

At one point, I required multiple injections twice a day and numerous supplements because of my severe food intolerance.

There were numerous hospitalizations, emergency situations, and moments when my loved ones feared for my life. Over more than five and a half years, I experienced multiple near-death situations, including a period of more than thirty days involving continuous hospitalizations and seven days in intensive care.

Through every chapter, my family remained beside me.

And through it all, God sustained us.

My journey has shown me something I will never forget: A patient's experience matters.

When someone lives with a rare illness, the symptoms may be unfamiliar. Diagnosis can take time, treatment may be complicated, and the person suffering may not always be able to speak for themselves.

That is why listening matters.
Education matters.
Compassion matters.
Research matters.
Advocacy matters.
And believing patients matters.

What my family and I endured became the foundation for something much larger than my own story.

I founded But I Fly Innovations Inc. because I do not want another patient or family to face the isolation, confusion, fear, and trauma that can accompany a rare illness.

Helping people affected by uncommon conditions is not simply an interest of mine. It is my heart.

I want to be a voice for those who struggle to make themselves heard. I want to help bridge the gap between patients, families, caregivers, medical professionals, researchers, educators, and communities. I also want to promote greater awareness and understanding of complex illnesses, particularly rare neurological conditions, seizures, hemiplegic migraines, autoimmune disorders, and other challenging disorders.

There was a time when families affected by autism were often misunderstood, and children with autism could be unfairly characterized because society lacked sufficient understanding of the condition.

Through years of advocacy, education, research, awareness, and the tireless work of countless families and professionals, significant progress has been made.

That history gives me hope.

I believe the rare disease community can continue moving toward a future in which patients are heard, families are supported, healthcare professionals have greater awareness of uncommon conditions, and individuals living with complex disorders receive compassionate and appropriate care.

There is still much work to do.

But I believe change begins when people are willing to listen, learn, advocate, and serve.

But I Fly Innovations Inc. is a scientific advocacy organization built upon compassion, ethics, lived experience, and professionally researched education.

Our focus is individuals affected by rare diseases and the loved ones who walk beside them.

Our community includes patient advocates, patients and families, caregivers, medical professionals, researchers, educators, and others committed to advancing knowledge and improving the lives of those facing uncommon and complex illnesses.

My journey has given me a profound appreciation for every person who chooses to stand beside someone during their most difficult moments.

To everyone involved in the rare disease community, regardless of your background or profession, please know that you have a special place in my heart.

I am determined to use what I have learned to extend a helping hand and partner with people who share this vision.

My hope is to help build a world where no person or family has to face the realities of rare illness feeling unseen, unheard, or alone.

That is the purpose behind But I Fly Innovations.

And I hope it can become part of your purpose, too.