Six-year-old Evelyn Horsfall has lived in northeast Ohio all her life but has never been able to play in the snow. This winter was different. For the first time, Evelyn played with her siblings in the snow in a pair of winter boots that stayed on securely.
Evelyn, who has spastic cerebral palsy, wears leg braces to help her walk. Previously, she wore a larger boot size to fit over the braces. The boots inevitably slipped off because of the spasticity in her toes. She ended up with cold, wet feet and before long, she was miserable and ready to go inside.
“This winter Evelyn was able to stay outside and play in the snow for as long as she wanted like any typical kid,” said Lesley Horsfall, Evelyn’s mother. “Seeing Evelyn’s joy and excitement made all of us happy.”
The purple boots that Evelyn sported last winter are a game changer for families like the Horsfalls. The boots are part of an adaptive footwear collection, called BILLY Footwear, that are designed to be functional, fashionable and inclusive for everyone. It’s the kind of footwear that Akron Children’s Haslinger Family Pediatric Palliative Care Center hoped to offer to Children’s Palliative Care patients and their families, a wish that is now a reality.
Donations make shoe purchases possible
The wish started with Sarah Friebert, MD, pediatric palliative care physician and founder and director of the Haslinger Family Pediatric Palliative Care Center, who heard about footwear companies offering grants to organizations. It sparked an idea. What if Children’s Palliative Care patients with special needs or mobility problems had access to footwear that made putting on shoes less challenging?
Dr. Friebert contacted Akron Children’s Foundation, asking if they could find philanthropic support so that Palliative Care could help fund adaptive footwear for Children’s patients and their families. By mid-2022, that support was in place. Thanks to a grant from the Sisler McFawn Foundation and funding from Akron Children’s donor Janet Tussing, Palliative Care is now able to pay for BILLY Footwear for Children’s patients at no cost to the patient’s family.
“Since we began purchasing BILLY shoes for our patients last year, we have provided more than 150 pairs of shoes to Palliative Care patients and other Akron Children’s patients with feet and dexterity issues,” said Stephanie Allen, nurse case manager in Akron Children’s Palliative Care who oversees the program.
Bringing smiles to kids’ faces
Cheryl Kunkler is familiar with BILLY shoes and other adaptive apparel. Cheryl, a retired nurse, has cared for special needs children most of her career, including at Akron Children’s Home Care. Her desire to work with babies and children with complex or serious medical conditions led to Cheryl and her husband, now deceased, fostering 93 special needs children over 42 years. One of those children, Sebastian, was adopted by the Kunklers in 2013.
Sebastian, age 14, was diagnosed with abusive head trauma when he was a month old. He developed several chronic conditions as a result, including partial paralysis, seizures and the lifelong need to use a gastrostomy tube, or G tube, inserted into his belly to bring nutrition directly to his stomach. Sebastian, who can’t walk or talk, wears ankle braces, technically called ankle foot orthotics (AFOs).
“With the AFOs on, Sebastian needs a wider shoe,” Cheryl said. “He has standers we put him in to help strengthen his legs.”
Cheryl has purchased BILLY shoes for Sebastian for years. She likes that the footwear is available in wider widths and easier to put on and take off. When Stephanie Allen contacted Cheryl to let her know a new grant would pay for his shoes, Cheryl was happy.
“Those shoes cost between $60 and $75 a pair,” she said. “We appreciate being able to use that money for other things for him, like getting him out to social activities. He really enjoys being around and seeing other kids and living vicariously through them. He’s always grinning and smiling when he is out among them.”
Getting the word out
The Palliative Care team is spreading the word about the generous donations they received so that Children’s patients and their families can take advantage of the BILLY Footwear opportunity.
“The parent or guardian can visit the BILLY Footwear website to select from among many different styles of shoes,” Stephanie said. “Follow the website instructions to determine the correct size and width, then email me at firstname.lastname@example.org with the style desired and the size information.”
Learn more about the Haslinger Family Pediatric Palliative Care Center.