A fund has been established at a bank in Hutchinson to accept donations from all who can help the family with expenses.

Rebecca Buhler, Hutchinson, was in Pratt earlier this week, doing what she has done for the past 32 years — taking care of her son.

Anthony Stokley, has neurofibromatosis, commonly known as "Elephant Man's Disease," which causes tumors to grow on the nerves. He will undergo his 90th surgery in April, not to remove the tumors, but to "debulk" them. They eventually become so heavy they cause his skin to split. He does not feel pain, however, because the nerves on the left side of his face have been removed.

Former residents of Pratt for about 10 years when Stokley was in elementary school, Buhler hopes people will "have a heart" and help with expenses if they can. A fund has been established at Bank of the West, 829 E. 30th, Hutchinson, KS 67502. Checks should be made to Anthony Stokley.

Stokley receives Medicaid benefits, but Buhler's husband and daughter will accompany him to Children's Medical Center in Dallas for the surgery and stay for 10 to 20 days. Once Stokley is out of intensive care, Gary Buhler, a retired minister, will stay in the hospital room with him.

Rebecca Buhler cannot take that much time off from work. She is a driver for a contract hauler for the Hutchinson News. Six nights a week, she makes a trip from Hutchinson to Liberal, with stops in between. Her son rides along every other night, needing a night at home to rest between trips.

"It wears him out," she commented.

Stokley had his first surgery at five months. An older brother had died at about that age, but the family didn't learn until Anthony's diagnosis that Robert also had the disease, inherited from their father. David Stokley's tumors are in his heart and lungs and resulted in the amputation of a leg. Two older sisters do not have symptoms, nor do their children.

Life hasn't been easy. Because of tumors on his tongue, Stokley's speech is difficult to understand. He sometimes needs a cane for balance. One eye and an ear have been removed. He left public school at 15.

"They couldn't understand him and he acted out," Buhler said. "Two teachers (three, according to Stokley) took him to the ground."

Besides riding along and helping with newspaper deliveries, Stokley takes walks in his neighborhood, stops into a convenience store for coffee, watches television and listens to music.

Twitter @CarolB_Tribune