Today, Jenessa, Evelee’s mom, is inviting you to step into hers. It’s not an easy path—it’s a hike through a healthcare system full of obstacles, a constant battle for resources, and an unwavering fight for her daughter’s well-being. Jenessa knows her story better than anyone, and we thought you should hear it straight from her heart. 

So lace up, because Jenessa is bringing you along for the climb.

The journey of caring for a child with unique medical needs is filled with challenges that test patience, resilience, and determination. For me, as a single parent navigating an often unaccommodating healthcare system, it has meant becoming an advocate, a fighter, and at times, an exhausted warrior. 

My daughter, Evelee, is a bright, happy two-year-old who charms everyone she meets. But behind her infectious smile is a story of constant struggle against barriers that shouldn’t exist.

The moment she was born, she was whisked away to the NICU for 24 hours. That experience was traumatic—I hadn’t planned for a C-section, and suddenly, everything I had envisioned for our first moments together disappeared. Instead of going home from the hospital, our first stop was to meet her neurosurgeon, Dr. Boydson.

For the first three months, everything seemed manageable. But then, the seizures started. We had made it three months without any signs, and despite being warned they could happen, we had begun to hope she might escape that fate. Her first seizure came out of nowhere, and soon, they became uncontrollable.

Our first hospital trip was a nightmare. It was the height of cold and flu season, so the emergency room was packed. We sat for hours, and they didn’t triage us as a high priority until she began seizing in the waiting room. 

Once inside, we watched helplessly as she suffered seizure after seizure, with little intervention. It wasn’t until a new set of nurses arrived and asked how many seizures she had experienced that they realized the gravity of the situation. From there, she was upgraded to trauma and given multiple rounds of rescue medication to stop the seizures.

We later learned that, while I was pregnant, an MRI had shown a possibility of polymicrogyria—an abnormal development of the brain. Doctors had hesitated to diagnose it definitively until they could confirm it with an ultrasound after birth.

Eventually, an MRI confirmed Evelee had perisylvian and frontal polymicrogyria in both hemispheres of her brain. Genetic testing later revealed that she has PPP2R1A neurodevelopmental disorder, a rare mutation with only around 50 known cases worldwide. Neither her father nor I carry the gene mutation—it was completely spontaneous.

The seizures, developmental delays, and medical complexities soon took over our daily lives. For a time, we found some stability. From October 2022 to June 2023, Evelie was seizure-free while taking two medications. 

But when they tried to wean her off one, she had a major seizure that led to respiratory failure—her first stay in the ICU. That was just the beginning of a long cycle of ER visits, hospitalizations, and adjustments to her care.

When Evelee needed feeding and speech therapy in 2023, we were given referrals—but it took me until January of this year to finally find a provider. The problem isn’t just about availability; it’s about access. In Atlanta, medical services are concentrated on the north side of town, where more affluent families reside. 

Meanwhile, we live on the southwest side—what I call a medical desert. There are few therapists here, and those that do exist only operate within traditional business hours.

As a working mother, getting Evelee to these appointments has been nearly impossible. Her nurse can’t drive her due to contract restrictions, and I can’t always take off work. We resorted to Uber Health for intensive therapy for a while, and it may have to be our solution again.

Insurance has been another uphill battle. They cover basic therapies—sessions that feel like busy work, things I can do at home with Evelee every day. But they refuse to cover the therapies that are truly effective, like dynamic movement intervention. So far, I’ve paid over $16,000 out of pocket for these crucial treatments. Every dollar is a fight—applying for grants, searching for financial assistance, and making sacrifices to ensure Evelee gets what she needs.

We were fortunate to get approved for the GAP program, which provides in-person nursing. But the system is flawed and unregulated. We’ve had nurses quit with no notice—one even left while we were in the hospital, never returning. The inconsistency in staffing means I often have to take time off work unexpectedly, which affects my students. 

As an ESOL teacher, I serve students from families who don’t speak English. When I’m not there, they miss out on vital support. My mother, who has taken on a co-parenting role, helps where she can, but she is disabled and cannot lift Evelee’s wheelchair or adaptive stroller. The strain on our family is immense.

When Evelee is hospitalized, I have to be her voice. Every move to a new room means re-explaining basic but crucial details: she cannot take seven medications at once or she will vomit. Her IVs must be placed by a specialized team because of her vein structure. Her anatomy is unique, making procedures that are standard for others ineffective for her.

I’ve learned that even with degrees and experience, medical professionals don’t always listen. I have to push back. I have to be relentless.

Despite everything, my biggest hope is that Evelee remains seizure-free. When she is, we can focus on her development—getting her into special needs pre-K, ensuring she receives proper therapies, and giving her a chance to thrive.

Evelee is a fighter. She is sweet, determined, and full of personality. She doesn’t have to say a word—her smile alone lights up the room. She works hard in therapy, even when it’s difficult. She’s found ways to adapt, using her right hand only when absolutely necessary, like when she’s determined to remove the arm immobilizer that keeps her from pulling out her NG tube. 

She makes us laugh, keeps us on our toes, and reminds us every day why this fight is worth it.

Caring for a child with disabilities shouldn’t be this hard. We need people outside of our community to advocate alongside us. Policies that limit financial assistance, healthcare access, and education rights impact real children, real families. The process shouldn’t be designed to make parents struggle more.

To fellow parents and caregivers: you are not alone. Don’t compare your child to others—every journey is different. Appeal insurance claims, demand better care, and educate yourself about available resources. And to those outside this world: don’t just ask how we are. Offer tangible support. Be aware. Be involved. Because disability rights affect us all, and no parent should have to fight this hard for their child to simply receive the care they need.

Offering tangible support is something that Chive Charities and our amazing donors like you are known for. In fact, your contributions have helped us change the lives of more than 700 recipients to the tune of $22M in aid. Today, we’re adding Jenessa and Evelee to that list.

Thanks to your donations, we were able to fund a rental car, Airbnb stay, and two weeks of intensive physical therapy at All Kids Are Perfect in Cary, North Carolina for a total impact of $8,446. Jenessa has demanded better care for her daughter. And All Kids Are Perfect and Chive Charities have answered to help provide it.

You can never know what someone is going through until you’ve walked a mile in their shoes. After this brief time spent with Jenessa and Evelee, we’re even more adamant about our mission to serve the underserved and champion the underdogs. Are you in with us? Please consider making a one-time donation or signing up as a monthly subscriber. Ten percent happier, here we come! DONATE HERE.