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Wolfson Children's Challenge: Running event celebrates patients and families, raises funds for Jacksonville's pediatric hospital
Florida Times-Union - 1/5/2020
Five-year-old Anna Hopson loves to play with dolls, paint with watercolors and eat french fries. And her future aspirations vary by the day.
"Today she says she wants to be a mommy, a king and a nurse," said her mother, Kathleen Hopson.
Nurses have been a near-constant in Anna's life. After two years of medical testing, she was diagnosed at age 3 with a progressive neuromuscular disorder called Charcot-Marie-Tooth disease.
"Muscle weakness affects her ability to stand, walk and use her arms and hands. It really affects her whole body, from her eye muscles to her digestive system, her kidney function and her bone strength. She uses a wheelchair," said Kathleen Hopson. "She will always live with disability."
Still, Anna's face is more often than not adorned with a smile, with what her mother calls her "sunshiny personality" on full display. Her inspiring story will be one of 55 recognized Jan. 25 at the Wolfson Children's Challenge, a series of marathons and runs to benefit the nonprofit hospital in Jacksonville. Each year a group of patients and families are recognized as the Wolfson 55, so named because the hospital was founded in 1955.
"Anna is a cheerful, friendly and inquisitive little girl with a big imagination. She's outgoing and loves to say hello to people," her mother said. "No matter what she goes through physically, her mood always bounces back quickly and she is smiling again before we know it."
Chris Busby of St. Simons Island, Ga., is co-chairman of the event, along with his business partner, Charlie Young. Busby and his wife Cassie's son and Young and his wife Bre's daughter have been Wolfson patients, and Busby learned of the run from Young.
Chase Busby, now 8, spent half his life fighting leukemia and was one of last year's Wolfson 55. In remission since 2018, he is a second-grader at St. Simons Elementary School.
"He loves playing with his sisters and friends, creating levels on Mario Maker 2 and engineering Gravitrax marble runs," Chris Busby said. "He's a rough-and-tumble boy doing all the things 8-year-old boys do, which is a tremendous blessing. He has been off of chemotherapy treatment for over a year now and has been completely off of all medications since April."
Wolfson "saved our son's life," he said.
"The doctors have an extensive knowledge of the care and treatment of the disease, but they also have a great love and passion for the patients they serve," Busby said. "We are blessed to have such world class health care for our children in the area. ... You never want to have to visit a children's hospital, but when you need one you want the very best. We are lucky to have one of the best in Wolfson."
Anna, now a kindergartner at Sabal Palm Elementary School, has been a Wolfson patient for illnesses, fractures, surgeries, bone density studies, infusions and X-rays, among other things.
"When we go to Wolfson we know that Anna will get the best medical care possible and, just as importantly, we know that Anna's whole person will be cared for," her mother said.
Doctors explain procedures in detail, and child life specialists help Anna feel confident and brave. Staff provide movies, art projects and guests who tell stories and bring books. A playroom offers a place for Anna and her three older brothers, who have learned to be patient while the focus is on their sister, to play video games and "feel at home," she said.
"No child wants to be hospitalized, of course, but our family has learned that we can make the best of it at Wolfson," Hopson said.
That's why the family will participate in the Children's Challenge.
"Being one of this year's Wolfson 55 means that our family has the opportunity to give back to Wolfson," Hopson said.
And it means Anna and her fellow patients, she said, "will be celebrated."
The challenge was created by Paul Wilson, whose son Luke underwent surgery just hours after his birth. Since its inaugural run in 2009, the event has raised about $4 million, $211,000 last year alone.
The 2020 proceeds will be used to convert an existing patient room on Wolfson's oncology floor into a room for MIBG, or metaiodobenzylguanidine, therapy.
The radioactive therapy is the "newest upfront treatment" for children with neuroblastoma, a common childhood cancer, according to Wolfson. Patients must be isolated for three to five days to prevent radiation exposure to other patients and staff.
The room that is being converted already has a separate, adjoining living space for parents and families. Voice and video equipment will be installed for patients and families to communicate, according to Wolfson.
Beth Reese Cravey: (904) 359-4109
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