A Pella family is continuing to raise awareness and rally community support for a rare neurological disease that affects their young daughter, Estella Henderson, and others across the country.
Estella, who just finished kindergarten at Madison Elementary, experiences sudden episodes of paralysis in different parts of her body, along with intense pain that can last for minutes, hours, or even days. Her father, Stephen Henderson, says there is currently no effective treatment available.
Despite the challenges, Stephen expresses deep gratitude for the support their family has received from the local community and Pella Community Schools.
“We’ve been overwhelmed by the kindness and encouragement,” he said. “But there’s still so much to be done.”
Stephen emphasizes that the biggest hurdle to finding a cure isn’t the science—it’s the funding.
“If I could have people hear one thing, it’s that the science is not the problem. The funding is,” he said. “At an international conference I attended, I asked a scientist, ‘What do we need to do?’ She told me, ‘We could cure this thing if we had the money.’”
That message has instilled a deep sense of urgency in Stephen, his wife, and a growing network of supporters. The Hendersons have launched EstellasWish.org and created Instagram and Facebook pages to raise both awareness and the financial support needed to advance research.
“This is why we continue pushing forward—to fund the research that can change lives,” Stephen said.
