TULSA, Okla — Kiley Proffitt founded Jack’s Generosity, an Oklahoma non-profit aimed at raising awareness about rare diseases.
It's a story Proffitt knows all too well through her own son.
“Jack spent his entire life in the NICU. He was seven weeks old when he passed away," she said. "At three weeks of age, we found out that Jack had a rare mitochondrial disease that was causing all of the symptoms that he had presented since right after delivery.”
WATCH: 'We're proud of them': non-profit spreading awareness on rare diseases:
After the struggles she faced, Proffitt wanted to make it easier for families with rare diseases to cope with the emotional and physical obstacles.
She said the non-profit directly helps community members and donates money to groups like Cure ARS, which supports research and families affected by rare mitochondrial diseases.
“Jack’s Generosity supports NICU families by delivering comfort boxes to them," said Proffitt. "These have clothing for baby, comfort items for mom, they can be fuzzy socks, toiletries for Mom, Dad, and also some things for siblings," she said.
Proffitt also said without fundraising events, the organization wouldn’t be able to fund its good deeds.
In fact, the organization is having its next “unique jeans” fundraising event on April 25.
She said this year, there will be a panel discussion, a silent auction, entertainment, and dinner.
“I just feel like it's important for us to give hope to those families," said Proffitt. "By showing them that we're proud of them for continuing to show up every day regardless of their situation."
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