Elliette Rae—our sweet, energetic, and loving little girl—has a smile that can brighten anyone’s day. Even though she is nonverbal, her joy shines through in the way she sings, dances, and interacts with her family. She loves watching Blue’s Clues, Sheriff Callie, and Scooby-Doo, and she thrives in social environments despite the challenges she faces every day.

Ellie has been diagnosed with Rett Syndrome, a rare neurological disorder that affects nearly every aspect of her life. She also has multifocal epilepsy, which causes seizures that require constant medication and therapy to manage. Because of Rett Syndrome, Ellie struggles with balance and coordination, making walking difficult and leading to frequent falls. She cannot speak, has trouble regulating her emotions, and often becomes frustrated when she isn’t understood, leading to overwhelming outbursts. Despite all of this, she continues to fight, laugh, and bring joy to those around her.

Why We Need Your Help

Ellie requires lifelong care, and as her condition progresses, her needs will only increase. Our family is doing everything we can to give her the best life possible, but the financial burden is overwhelming. Donations will directly help cover:

Medical Expenses & Therapy: Ellie requires physical, occupational, and speech therapy multiple times a week, as well as frequent medical tests like MRIs, CT scans, and EEGs to monitor her condition.

Transportation Costs: Every trip to Ellie’s Rett Clinic is a 3-hour drive one way, adding significant fuel and travel expenses.

Special Equipment: Ellie may eventually lose meaningful use of her hands and feet, possibly becoming wheelchair-bound. She will need a wheelchair, therapy swing, special bed, and safety gates to make daily life safer and more accessible.

In-Home Modifications: Ellie struggles with her gait and falls frequently. A ramp would allow her to move more safely than stairs, and other modifications will make our home a safer, more accommodating space for her growing needs.

A Mother’s Full-Time Commitment

Ellie’s mother is her full-time caregiver, providing 24/7 care to ensure she gets the therapy and support she needs. Her older brother has also experienced the many changes that come with Ellie’s diagnosis, adapting to a life centered around her medical needs. While we wouldn’t change a thing about our sweet girl, we want to ensure she has every opportunity to experience happiness, safety, and comfort in her life.

Our Hope for Ellie’s Future

Our greatest prayer is for a cure—a future where Ellie can overcome the challenges of Rett Syndrome and epilepsy. Until that day comes, we are committed to giving her the fullest, happiest life possible. Your support means the world to us. Every donation, no matter the size, helps us provide Ellie with the medical care, equipment, and safe environment she needs.

If you cannot donate, we would be so grateful if you could share Ellie’s story to help us reach others who may be able to help. Together, we can raise awareness for Rett Syndrome and ensure that Ellie continues to shine her light on the world.

Thank you for being a part of Ellie’s journey. Follow "elliettefightsrett" on tiktok to stay in the loop.