Turning Grief Into Good: How One Tulsa Mom Is Supporting Families Facing Rare Diseases
In the deepest shadows of grief, Kiley Proffitt found a way to light a path of compassion and hope for others after the heartbreaking loss of her infant son, Jack. By founding Jack’s Generosity, she is ensuring her son’s memory lives on through a mission of enduring altruism for other families facing similar circumstances.
A Rare and Unexpected Journey
When Jack was born in 2024, immediate complications put him into the hospital’s Neonatal Intensive Care Unit (NICU). At three weeks old, tests revealed that he had a rare mitochondrial disease caused by inherited AARS2 gene mutations (mito), leaving his body unable to produce the energy needed for his heart and lungs to function on their own. When presented during infancy, mito is more than 99% fatal. Currently, there is no cure for the disease.
“I’m certainly not an expert on any of it, and I’ve learned way more than I wish I had to about all of it, but I think that’s the thing that really fuels a fire for me; to help and be a voice for other families,” Proffitt explained. “It just takes a village to educate or find doctors and resources that can help a family when you’re in that.”
Jack passed away at only seven weeks old, but the time shared with his family will live on. “I felt called to step up and be a voice and give Jack’s short life more meaning and life,” said Proffitt. “It continues far beyond him physically being here.”
A Legacy of Connection and Advocacy
“We want to provide hope and support to families undergoing their own rare disease battles,” Proffitt stated. “In addition to supporting families, our goal is to educate the public about rare diseases and their effects.”
The focus of Jack’s Generosity is multifaceted, with support for families and the medical professionals who work with them at the core. The organization provides comforting gift boxes, thoughtfully curated and packaged for NICU/PICU parents and patients, rare disease families, and siblings and other family members of affected patients. These items are a powerful reminder that those affected are not alone.
Additionally, through fundraising efforts, they provide financial support to CureARS, a nonprofit organization focused on raising awareness, providing family support, and funding research toward a cure.
Delivering a gift box to the Hillcrest NICU
It Takes a Village
To fund these efforts, community support is essential.
Jack’s Generosity is currently preparing for its next major fundraising event, the “Unique Jeans” benefit, scheduled for April 25. In its second year, this event will be held at Wompa in Tulsa (3306 Charles Page Blvd.) from 7 to 10 p.m., and dressing in denim is encouraged, with an emphasis on the distinctive style of jeans worn. Dinner will be served, with live entertainment, speakers, panel discussions, and a silent auction. Two distinguished individuals will be honored at the event with the Life Support Award for their support for families in NICU care and their advocacy for rare diseases.
Tickets and sponsorships can be purchased at jacksgenerosity.com.
Other ways to help and support Jack’s Generosity are available on their website. Requests for a comfort box from Jack’s Generosity can be made with an online form for families who could use some love and support. Volunteerism is also welcome for anyone who has a heart for helping those in need.
“I’d love to see Jack’s life continue through supporting others, and I get to watch him grow in a unique way,” said Proffitt. “It just keeps me going knowing that his life is still impacting others.”
