By: Allison Apple, KCH Donor Specialist
Sully was born in January 2024, seemingly healthy. But shortly after birth, his parents, Staci and Chandler, noticed what appeared to be seizures. Further tests revealed Sully had KCNT1-related epilepsy, a rare condition with fewer than 100 documented cases worldwide.
Sully was brought home and placed under the care of the KCH Carousel team.
After three stays at Children’s Mercy Hospital, the Allisons chose to bring four-month-old Sully home under the care of the Carousel team at Kansas City Hospice & Palliative Care (KCH), with a prognosis of six months to live. The Carousel team provided weekly visits, offering both medical and emotional support.
Finding Comfort and Creating Memories
“The whole Carousel team was nothing short of amazing,” shares Staci. Beyond medical care, they helped the family make memories, organizing craft projects to create keepsakes like handprints and footprints.
Leslie Rusch, a social worker with Carousel, recalls, “We focused on living. We focused on those moments of joy with Sully and supported the family through a difficult time.”
One of the most meaningful moments for the Allisons was an early Halloween celebration. Trick-or-treating was high on their family bucket list, but knowing Sully’s fragile condition, the Carousel team created a magical celebration in July. They transformed a wing of Kansas City Hospice House™ into a festive wonderland, with decorations, costumes, and treats.
“It was bigger than a Halloween party,” Staci recalls. “Everyone dressed up. There was candy, crafts, a volunteer-made cake—it was truly special.” Chandler adds, “It was the best Halloween party I’ve ever been to, and it was set up by people we barely knew.”
A mix of KCH team members and volunteers came together to create a festive Halloween celebration in July for the Allisons. Creating this precious moment is one of the many things your generosity does to make the Carousel program so valuable to local families.
The Importance of Precious Moments
Sully died in September, just shy of nine months old. Though his life was brief, it was filled with love and treasured memories. The Carousel team helped the Allisons embrace each moment, ensuring Sully’s story was one of love, care, and cherished time together.
To read more about the Allison family’s story, visit KCHospice.org/PreciousMoments