Four-year-old Sara Burke was fighting cancer, and her parents decided that Children's Hospital of Philadelphia had to be more than a place where the family struggled through a crisis.
So they made it Sara's playground.
Sara wore sunglasses in the hallways and an Afro wig to surgery. She used needleless syringes to squirt paint and make art — and a few times squirted people in fun.
"Not everybody knows whether it's appropriate to be happy in the hospital," said Jennifer Burke, 43, Sara's mother. "But if we waited until she got out to make those happy memories, we'd have nothing but heartbreak."
Sara died in 2008 of complications from a malignant brain tumor after spending seven months in the hospital. To honor her memory and to aid others, Jennifer Burke and her husband, Kevin, have developed a kit to help the families of critically ill children create good memories in the midst of dire circumstances.
The couple, who own Burke Bros. landscaping design firm in Wyndmoor, will soon begin distributing what they call "Inspiration Kits" to families on Children's oncology floor, courtesy of their Sara's Smiles Foundation.
The plastic boxes, emblazoned with a cartoon figure of Sara, is chock-full of toys, stickers, crafts, a squeezable stress reliever, file folder, and cloth backpack. The kits have been several years in the making and were funded through Burke Bros.' annual Mother's Day Plant Sale, which is Friday through Sunday at 7630 Cheltenham Ave.
"We researched the products, visited trade shows, found manufacturers and supplies," said Kevin Burke, 46. "When you live in the hospital for seven months, you see all the things families can use."
Since Sara's death, the plant sale, which offers discounted plants recycled from Burke Bros.' award-winning exhibits at the Philadelphia and Macy's Flower Shows, has raised about $28,700.
Families of critically ill children are scared, anxiety-ridden, and working so hard to care for their child that sometimes it's hard to think about bringing joy and happiness into the hospital, said Nicole Ellis, a Children's social worker who helped the Burke Family.
The Burkes used arts, crafts, music, and games. Their approach could help other families, Ellis said.
"And it's coming from a former family, someone who has walked in their shoes," Ellis said. "As great of a support team as we have at the hospital, there is nothing like sharing with another parent."
In addition to the kits, the foundation has a website that lists resources available to families who find themselves confronting a similar situation to the Burkes'.
Jennifer Burke was watching her daughter on stage during a day-camp play when she noticed that one of Sara's eyes was wandering, as if the 4-year-old had a lazy eye.
"I couldn't wait to get her off stage and to the doctor," Jennifer Burke said.
The family went to a pediatrician who examined Sara's eye and sent the family to Abington Memorial Hospital for tests. From there, an ambulance transported Sara to Children's. She was diagnosed with a malignant tumor at the base of her brain.
The family all but lived at Children's for the next seven months — through surgeries, extensive rehabilitation, and stem-cell transplants. Jennifer Burke slept in the hospital room with Sara. Kevin Burke worked, visited the hospital daily, and stayed at home with the couple's other children, Rebecca, 11, and Lucas, 13.
The family explained to Sara about her procedures, machines, and medications. They used guided imagery ("imagine you're on a beach") to help Sara stay still while undergoing CAT scans, and made clay sculptures during stem-cell procedures.
"Sara was a little rock star," Jennifer Burke said. "She'd walk down the hall on her walker, wearing sunglasses, and singing 'We are the champions.' She was so positive."
Sara eventually went into remission and left the hospital. She had talked with her parents about doing something to say thank you to Children's. But three months later, she died — one day after Mother's Day.
Her parents began planning the framework for the foundation, and soon Kevin Burke thought of repurposing the plants his firm uses in its flower-show presentations. Burke Bros. has participated in the Philadelphia Flower Show for 14 years, winning the Best in Show Award in 2011 and sharing it this year.
Clearview Nursery in Souderton also donated plants for the sale.
The sale will include annuals, perennials, and hanging baskets — about 100 varieties of plants, shrubs, trees, and tropicals.
The funds will be used to produce more Inspiration Kits, which the family hopes to distribute to other divisions at Children's and other hospitals.
"We were fortunate to have amazing family and friends to support us," but in the hospital, "you see a lot of people that don't have that, and it's tough to watch, " Kevin Burke said. "We just wanted to help."
Contact Kristin E. Holmes at 610-313-8211 or firstname.lastname@example.org.