Support Elora's Fight Against Leigh Syndrome

Help Us Support Elora in Her Fight Against Leigh Syndrome

Hi, we’re Blaine & Courtney Toler, and one of the greatest blessings in our journey has been the incredible community that has formed around us, a community built on love, support, and lifting each other up in times of need.

Right now, we are rallying together to support Carter and Dylana Lovern, devoted parents to their beautiful daughter, Elora.

Meet Elora - Our 1 in 40,000

Elora is a fighter, but she faces a battle no child should have to endure. She has been diagnosed with Leigh Syndrome, a rare and progressive disease that affects the central nervous system. This disorder is caused by a genetic mutation that impacts the mitochondria, the “powerhouse” of the cells, leading to energy deficiencies that can severely damage or even destroy cells throughout the body.

Leigh Syndrome affects only 1 in 40,000 children, and while there is currently no cure, treatment consists of medications and supplements to help manage symptoms and slow progression. Hearing this diagnosis has been devastating, but Elora’s strength inspires us to fight alongside her.

Elora’s Journey

Elora’s story has been one of resilience from the very beginning. She made her entrance into the world at just 33 weeks' gestation, spending her first five weeks in the NICU. She struggled to breathe on her own, and though doctors prepared for her to go home on oxygen, she defied expectations, coming off oxygen support just 24 hours before discharge.

For a while, it seemed like she was on the other side of her early challenges. But as she grew, her parents noticed something wasn’t quite right. She wasn’t gaining weight as expected. After multiple pediatrician visits and specialist consultations, she was diagnosed with growth hormone deficiency (GHD).

An MRI, meant to assess her pituitary gland, revealed something far more concerning. A quick Google search of the suspected diagnosis left her parents heartbroken, Leigh Syndrome. The prognosis they found was devastating: most children with this condition do not live past the age of three. And Elora was just months away from her second birthday.

Still, there was hope. Initial genetic tests came back negative for mitochondrial mutations, giving her family a brief sigh of relief. But at a follow-up with her geneticist, additional tests showed elevated lactate levels, confirming a mitochondrial disorder.

Two weeks ago, Elora was hospitalized for five days as doctors worked to regulate her levels and place an NG feeding tube to help provide the nutrition she needs. This is only the beginning of a long and difficult road ahead. No two cases of Leigh Syndrome look the same, but her family remains steadfast in their faith, praying for slow progression, and ultimately, a cure.

How You Can Help

Elora deserves a life full of love, joy, and every opportunity possible. Her family is doing everything they can to support her, but they cannot do it alone. Any contribution, whether big or small, will go directly toward medical expenses, specialized care, and ensuring Elora has everything she needs to fight this battle.

Even if you aren’t able to donate, simply taking the time to read her story and share it helps raise awareness for Leigh Syndrome. Every bit of support means the world to Elora, her family, and everyone who loves her.

We are holding onto faith, hope, and the belief that miracles happen every day. Thank you for standing with us in Elora’s fight.

With love and gratitude,

Blaine & Courtney Toler