Simple trip outside could prove fatal for 4-year-old
For most people, going for a walk or driving in the car is a normal, daily activity. But for Cole Boytim, 4-year-old son of Lisa and Scott Boytim, of Ruffsdale, these activities could be fatal.
Every time Cole goes outside, gets upset, or even takes a bath, he breaks out in lesions inside and outside of his body, his parents said.
"When I put him in the tub, his skin is so sensitive that the water itself burns his skin," said Lisa Boytim, 36. "His skin gets itchy and red and looks like somebody scalded him."
Cole was diagnosed with mastocytosis and urticaria pigmentosa when he was born, his pediatrician, Dr. Bharati Desai said.
Mastocytosis is a rare, incurable disease of the skin that causes lesions inside and outside of the body, she said. Urticaria pigmentosa is an uncommon rash that causes itching and hives, she added.
"It's unbelievable how this mother is living with this kid," Desai said. "He's pigmented from head to toe."
Lisa Boytim said Cole's lesions have already been diagnosed as ulcers that could lead to cancer, and the disease has affected Cole's lower intestines, lungs and bones.
"He's on medication from the time he gets up to the time he goes to bed, and that's just to get through the day," Lisa Boytim said.
She said Cole is getting treatment, but his family and friends are planning a benefit to raise money to build him an indoor playroom that will include an air-conditioned gym, a bedroom with special windows and doors, and a speciality water spa.
The fundraiser will be held from 6 to 10 p.m. Saturday at the Veterans of Foreign Wars in Mt. Pleasant.
Abby Abbondanza and Jeff Volek, of the PovertyNeck Hillbillies, have volunteered to perform an acoustic show from 9 to 10 that night.
"For a little boy to have this and not understand it, he has a great attitude," said Abbondanza, lead vocalist of the PovertyNeck Hillbillies.
D.J. Rock-N-Robin will spin music at the event, while people play games, sing karaoke, eat refreshments, and get their faces painted.
Ticket-holders will have the chance to win prizes and buy raffle tickets to win an autographed Pirates' baseball or a cowboy-themed basket.
The Boytims said they need at least $100,000 in donations to begin their building project.
After the Boytims raise the money for the supplies, The Greater Pennsylvania Regional Council of Carpenters will donate labor and time to build the room, said Carpenters' member John Onusko. The building plans are under way, he added.
"We hope to do it in a timely manner," Onusko said. "We're productive and well-trained; and it should go fairly quick."
The Boytims said they turned all the locks in their home backwards because Cole wants to go outside to play like his older sisters and brothers.
Lisa Boytim said Cole is unable to get immunization, so his older brother will be home-schooled this fall. She is afraid the older boy will bring home childhood diseases that Cole cannot fight off.
Heat, stress, exercise, certain food or flavoring, a bee sting, and friction on the skin can trigger mastocytosis, said Valerie Slee, spokeswoman of The Mastocytosis Society.
"Reactions could include an instant intense flushing, rapid heartbeat, headache, chest pain, dizziness, nausea, diarrhea, fainting, blood pressure changes, shock, and for some, outright anaphylaxis," she said.
Anaphylaxis is a severe allergic reaction that can rapidly cause death.
The Boytims said they relocated so Scott Boytim could work at home and monitor Cole.
"If anything happens to him, I'll be there," Scott Boytim, 36, said.
He owns and operates Boytim Machining Inc., in Ruffsdale.
"He's in constant torment. He's in constant pain," said Rachel Davis, of South Huntington Township. Davis is helping the Boytims plan the benefit.
Davis said she lost her 7-year-old daughter, Jessica Davis, to Hutchinson-Gilford Progeria Syndrome, a rare, fatal, genetic condition characterized by the appearance of accelerated aging in children.
"Just to have another person who can comprehend what I'm going through is amazing," Lisa Boytim said.
Davis said she misses her daughter and prayed that she would have the opportunity to help another child with a life-threatening disease.
"I know he needs the room, because I see him every day," Scott Boytim said. "He's just like a normal kid in the house. It's outside of the house that he has all these problems."
