Born on October 23, 2016, Savannah was the long-awaited third child and first baby girl.

Kelli envisioned a future filled with mother-daughter moments — spa days, shopping trips, and dressing Savannah in twirl-worthy dresses. Little did they know, Savannah’s life would lead them on a journey marked by extraordinary challenges and remarkable resilience. She would still experience those things, but in a different way than Kelli first imagined. 

Looking at her life experiences, and even part of her name, we thought about Savannah’s deep love for music and emotional highs and lows and thought of one superstar whose work mirrors much of her journey: Taylor Swift. Like millions of other people, Savannah is a big fan.

Check out the Eras of Savannah’s life and experiences so far:

The Early Years – “Fearless”

Much like Taylor Swift’s debut album, “Fearless,” which introduced the world to her infectious optimism and youthful spirit, Savannah’s early days were filled with dreams and potential. Her mother imagined a life where hope and happiness seemed boundless.

However, as Savannah began experiencing seizures at just six weeks old, the family’s life took a turn that challenged their initial expectations. This period felt like stepping into the unknown as they struggled to understand the gravity of Savannah’s condition.

“Everything will be alright
If you keep me next to you.”

The Diagnosis – “Red”

The long wait for a proper diagnosis felt like an emotional rollercoaster. After numerous medical visits and a critical EEG test, Savannah was diagnosed with CDKL5 deficiency disorder, a rare neurodevelopmental disease. 

This disorder, caused by mutations in the CDKL5 gene, brings severe symptoms including early-onset epilepsy and neurodevelopmental delays. The family grappled with the realization that Savannah’s life would be markedly different from the one they had envisioned.

“Time won't fly, it's like I'm paralyzed by it
I'd like to be my old self again
But I'm still trying to find it.”

Early Interventions – “Shake It Off”

As a result of her rare medical diagnosis, Savannah’s daily life involves frequent seizures, some lasting up to five minutes and requiring rescue medication. She has limited vision and must be hospitalized whenever she falls ill due to her medically fragile state. 

The family’s life often revolves around Savannah’s needs, with Kelli working part-time to juggle caring for her daughter and the many appointments and therapies that go along with it.

Despite these challenges, Savannah’s spirit shines brightly, and she is loved by so many people. Savannah attends a specialized school and receives early intervention services, including physical, occupational, feeding, speech, and vision therapies. Her therapy needs are intensive, but she meets them with incredible resilience. 

Savannah brings joy and light wherever she goes, her giggles and kicks lighting up any room. She has taught her family patience, understanding, and appreciation for life’s simple joys.

While Savannah’s condition means the spa days or shopping trips they once dreamed of might look a little different, it doesn’t stop Kelli from painting her daughter’s toenails and dressing her in beautiful dresses. 

The bond they share is unbreakable – it’s a lot like the unwavering connection Swifties have with Taylor Swift’s music.

Savannah and her family have learned to face each day with positivity and determination – they’re basically pros at shaking it off.

“But I keep cruisin'
Can't stop, won't stop movin'
It's like I got this music in my mind
Sayin' it's gonna be alright.”

A New Chapter – The Next Era

Recently, thanks to the generosity of Chive Charities donors, Savannah received a grant for intensive therapy sessions at the renowned NAPA Center for a total impact of $7,940.

These therapies have been life-changing, providing her with the support and care she desperately needs. The NAPA Center specializes in intensive therapy for children with neurological and developmental conditions, offering hope where traditional therapies may fall short.

The impact of these therapies on Savannah has been profound. She has shown improvements in her motor skills and cognitive responses. The intensive sessions have given her the tools to better navigate her world, and allow her some well-deserved independence.

The benefits extend beyond Savannah’s individual progress, too. The family has gained a support network through the NAPA Center, connecting with other families facing similar challenges. This sense of community has been invaluable, providing emotional support and practical advice. Knowing they are not alone in their journey has lightened the burden and strengthened their resolve to keep fighting for Savannah’s well-being.

Chive Charities is so grateful to the NAPA Center for its exceptional work in helping families like Savannah’s. We also thank our incredible donor community for your unwavering support. Your contributions make stories like Savannah’s possible, bringing hope and happiness to families facing challenges and unnecessary roadblocks.

The journey with Savannah has been life-changing for her entire family. They have learned to celebrate the small victories, to find joy in the midst of adversity, and to appreciate the pure, unconditional love that Savannah embodies. She has taught them that life’s value is not measured by milestones or conventional achievements but by the love and resilience they share.

Savannah, like a true Taylor Swift fan, inspires everyone she meets with her courage and unbreakable spirit. Her story is a testament to the magic that happens when a community comes together to support a child in need.

To continue supporting families like Savannah’s and to help make the world 10% happier, we encourage you to join our mission. Your monthly or one-time donation can make a significant difference. Thank you for being a part of our community and for helping us bring light to the lives of those in need. Like T. Swift reminds us, “Just be yourself. There is no one better.” DONATE HERE.