My Story

My disability story began when I was 12. At the time, it was a simple asthma diagnosis and a new medication, nothing that seemed unusual or particularly life-altering. I took the medication without issue for a few years, and for a while, everything felt fine. I lived like any other kid, never imagining that one prescription could change the course of my life.

Then, in February 2020, everything shifted.

I was 14, midway through my freshman year of high school, when I developed a tremor in one of my legs. At first, it was confusing and a little scary, but things progressed quickly. Walking became difficult. My parents and I visited multiple doctors and hospitals, hoping for answers, but none came. The tremor turned into weakness. The weakness became paralysis. Before long, I was partially paralyzed from the belly button down, and no one could tell us why.

I was eventually admitted to Children’s Hospital in Birmingham, where I spent three days undergoing evaluations and physical therapy. I left the hospital still unable to walk independently. The official diagnosis they gave me at the time was Functional Neurological Disorder (FND), a stress-related condition. Essentially, they told me it was all in my head. I was 14, confused, scared, and now being told that my very real, very physical symptoms weren’t real enough to treat seriously.

Once I was discharged, I was sent home with no real answers. I couldn’t sit up or move on my own. And worse, I couldn’t find a single doctor who would truly listen to me. I began using a manual wheelchair at school, while the world around me shut down for COVID. Everything about my life changed at once.

Then came a call that made everything make a little more sense.

My asthma doctor reached out to let us know that the medication I had been taking since I was 12 was under a second FDA review. It was being reevaluated due to neurological side effects in adolescents, symptoms that lined up exactly with what I was experiencing. I stopped the medication immediately, but the damage had already been done.

In the months that followed, I began intensive physical therapy, sometimes up to three times a week. I regained some core strength, but my legs remained weak and severely atrophied. Simple things like shifting in bed or transferring in and out of my wheelchair caused my hips, knees, and ankles to dislocate. The pain was constant and consuming. I spent much of my time in bed, surrounded by pillows just to find a position that didn’t make me cry.

Yet I kept going.

At the same time, I started experiencing seizures that seemed to be tied to my menstrual cycle. I was referred to a gynecologist, who suspected endometriosis and put me on a birth control injection to try to regulate my symptoms. While we didn’t get a firm diagnosis then, the hormonal stabilization helped tremendously, not just with the seizures but also with my overall functioning.

During that same time, I finally saw a specialist who took my heart rate in the office and immediately noticed something wasn’t right. I was passing out regularly and couldn’t tolerate standing for long. I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) by a cardiologist, started medication, and visited a new physical therapist to help manage my symptoms.

At that physical therapy appointment, everything changed again. My new PT noticed how unstable my joints were and how hypermobile I seemed. After a few more assessments, she asked me, “Have you ever heard of Ehlers-Danlos Syndrome?” I hadn’t. So she explained it to me—EDS is a connective tissue disorder that affects the body’s collagen, leading to joint instability, chronic pain, fatigue, and frequent dislocations. As she spoke, it was like someone had finally turned the lights on. For the first time, everything started to make sense.

I was given a clinical diagnosis of Ehlers-Danlos Syndrome, and things began to fall into place. With that diagnosis, I was referred to a geneticist for further testing. When the results came back, they were negative for all currently identified genetic forms of EDS. That meant I most likely have Hypermobile Ehlers-Danlos Syndrome (hEDS), the only subtype of EDS without a known genetic marker. Because of this, we can't confirm it 100% through a test, but based on my history, symptoms, and physical assessments, the diagnosis fits.

Getting that more official diagnosis was a turning point, not just medically, but also emotionally. It allowed me to finally begin grieving the able-bodied life I thought I’d have and start imagining a life built around who I actually am. I stopped waiting for a version of my body that might never exist and started asking, What can I build with the body I have now?

Since then, I’ve been through a lot, more than most people experience in a decade. I’ve had kidney infections, staph infections, multiple surgeries, and even a bout of liver failure. But I’ve also accomplished things no one expected. With the right medications, consistent physical therapy, and a strong support system, I’ve regained the ability to walk short distances, I live on my own, and, most importantly, I’ve begun creating a life that feels meaningful and joyful, even if it looks different than I once imagined.

Today, I’m a college student at the University of Alabama, pursuing a degree in Human Development and Family Studies with a concentration in Child Life and a minor in Digital Consumer Engagement. I’m part of an Accelerated Master’s Program and, if everything goes to plan, I’ll finish my bachelor’s in Spring 2027 and my master’s that fall.

More than anything, I hope to use my story to support and advocate for children facing medical trauma, just like I did. I want them to feel seen, safe, and understood in the way I often wasn’t. I want my pain to have a purpose.

The past few years have been chaotic, painful, and often isolating. But they’ve also taught me how to live with gratitude, how to fight for my care, and how to love a body that doesn’t always cooperate. I still have hard days. I still wish for more. But I also see all that I’ve gained strength, resilience, and a deep appreciation for life’s quiet victories.