Many families take stock of things to be grateful for as the holidays approach.
That’s especially true for the Rawley family, which endured catastrophic health and financial difficulties in recent years but are now helping other families in need through an association with the Gift Gallery presented by Curé of Ars Mothers of Young Children.
Ethan, the youngest of Brian and Kari Rawley’s three children, was born with a chromosomal anomaly and a heart defect. Permanently confined to a wheelchair, Ethan is dependent on others for all of his care.
Six years ago, things took a turn for the worst. Ethan’s heart valve failed in 2011 and his mom, Kari, was diagnosed with breast cancer a year later, undergoing a bilateral mastectomy plus five months of chemotherapy.
As if that weren’t enough, Ethan’s dad and Kari’s husband, Sgt. Brian Rawley with the Kansas City Police Department, underwent shoulder surgery.
When Ethan’s heart valve failed again in 2013, even his most simple needs, like being lifted in and out of the wheelchair, were impossible for his parents due to their own health conditions.
Further complicating the situation, Children’s Mercy Hospital didn’t have the necessary facilities to treat Ethan.
“We had no local options for help as Children’s (Mercy) couldn’t perform the surgery we needed, so we traveled to Boston,” Kari said. “For about three years we were a train wreck of health issues.”
Financial stress also became acute. Kari, a CT tech, went back to work full-time to help pay for things insurance doesn’t cover, like Ethan’s formula and diapers.
“We were spending approximately $20 to $25K — yes, thousands of dollars — on Ethan’s needs,” Kari said. “We struggled with paying for his needs and our household needs and me still keep a job to do so.”
That’s because, with no nurse available for Ethan at the time, Kari often missed work to care for him. To close the financial gap and offset mounting expenses, the Rawley family started a home-based business —Salvage 2 Chic, which re-purposes old wood into high-end, handmade decor and furniture.
“We were still playing catch-up financially from our three straight years of healthcare issues and I was still having surgeries,” Kari said. “And we had the huge need of a wheelchair-accessible van looming in our near future. I had lost so much upper body strength with my surgeries that it was getting near impossible to pick Ethan and his 65-pound wheelchair up.”
Salvage 2 Chic allows the Rawleys to earn extra money without having to work second jobs outside the home, helping the family catch up on bills and buy the needed van. A strong support network of family and friends also came to the Rawleys’ aid.
“Friends were at our doorstep from sun up to sundown to help me with Ethan,” Kari said. “I had people driving me, my husband, and my other kids to physical therapy appointments, doctors appointments, chemo treatments. ... We made it. With a lot of help.”
The Rawley family also found an extra-special resource in Bridget Robertson, who founded Jack’s Heart Fund with her husband after the death of a child. The two families had a lot in common.
“Her son, Jack, had a complex heart and he had been treated at Boston Children’s (Hospital),” Kari said. “He unfortunately succumbed to his heart defects, and Jack’s Heart Fund was founded by the Robertsons to carry on Jack’s name and memory.”
Mothers of Young Children, a ministry group at the Curé of Ars Catholic Church in Leawood, has donated several times to Jack’s Heart Fund, which provides financial to families like the Rawleys facing a crunch due to a child’s extended hospitalization for heart-related care.
“She was a fierce advocate for her Jack and helped guide me in my advocacy for Ethan in getting to Boston,” Kari said of Bridget.
Bridget also helped get Salvage 2 Chic involved with the Gift Gallery last year.
“We had come full circle,” Kari said. “Being a vendor at an event that had helped fund a donation to a group that financially and emotionally helped us get Ethan fixed was simply amazing. It felt so good to give back to the Gift Gallery last year and being a part of an organization that helps our local kids and had helped us was humbling.”
Kari’s cancer has been in remission for for five years and Ethan is gaining weight and doing well.
The Rawleys feel like they’ve reached the light at the end of the tunnel, but they take nothing for granted.
“We learned to live our lives in moments and make each moment count,” Kari said. “Before we knew it, those moments became years we were never promised and we have some pretty amazing moments to look back on.”
15th annual Gift Gallery presented by Curé of Ars Mothers of Young Children
When: Nov. 10-11
Where: Curé of Ars Catholic School, 9403 Mission Road in Leawood
What you need to know: The annual charity benefit sponsored by the Curé of Ars Catholic Church’s ministry group, Mothers of Young Children, in partnership with Country Club Bank brings together more than 40 artisans and vendors for a unique holiday-shopping event.
For the first time, it’s a two-day affair with a special “Preferential Shopping Night Out” from 6 to 8 p.m. on Friday, Nov. 10. Tickets for the preferred event — which includes food, drinks, door prizes, and the first crack at purchasing merchandise — are $20.
The regular Gift Gallery, which has raised more than $230,000 in its first 14 years, is from 9 a.m. to 4 p.m. on Saturday, Nov. 11, at the school. Admission is $5 and all proceeds benefit local Children’s charities and scholarship funds.
For more information or to buy tickets, visit http://giftgallerykc.com/.