On a mission to find a cure for CLN2 & Batten disease

Helen Betty Born was welcomed into the world on May 31, 2021— a sweet, loving baby who completed our dream family alongside her big brother, George. She was full of joy and gentler than her spirited brother, bringing endless happiness to our lives. She has loved pink, hugs and all things girl since the start. 

Around age two, we noticed slight speech delays and clumsiness but were reassured that children develop at their own pace. By the time Helen turned three, we started speech therapy to give her extra support.

Then, on June 10, 2024, Helen had her first seizure, followed by another on July 22, leading to a diagnosis of epilepsy (Clonic-Tonic). She started anti-seizure medication, and we hoped she would outgrow it. By fall, new symptoms emerged — eye flutters, sudden falls, and shaking — resulting in a second epilepsy diagnosis (Eyelid Myoclonia) and additional medication.

On January 8, 2025, Helen suffered another seizure. Her speech wasn’t improving, and her behavior was changing. Trusting our instincts, we sought answers at Mayo Clinic, where Helen underwent a 24-hour EEG and genetic testing.

On March 10, 2025, our world shattered. A Zoom call with Helen’s doctor introduced us to a diagnosis we had never heard of — CLN2 Batten disease. The words that followed changed our lives forever.

In the first few days of unbelievable heartbreak that followed, there was a pink sky at sunset every night. Helen would point to the pink sky, and through the tears in our eyes, we would see a sign of hope and a reminder that finding a cure for our sweet girl is now our purpose. We quickly rallied, reaching out to every physician and researcher around the world who would listen. Out of this fight, Helen’s Pink Sky Foundation was born — dedicated to funding research and finding a cure for this devastating disease. Helen’s battle is now our mission, and we won’t stop until we conquer Batten disease. 

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Join the team at Helen's Pink Sky Foundation in the fight to help find a cure for Helen, and all the other kids and families impacted by this unimaginable disease. 

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"She's got plenty of nights under pink skies."