To ease Kohen’s pain

Parents organize golf event to benefit infant with rare skin disorder

By Rodney Richey, Herald Bulletin Feature Writer

ANDERSON — “Every day is so different,” said Amanda Pfeiffer of Anderson.

Pfeiffer was referring to her infant son, Kohen, who lives with a condition known as epidermolysis bullosa.

“Like right now, he can’t be out in the heat and humidity, because it makes him blister really easily. It’s an everyday battle, and you never know what you’re going to get from day to day.”

Nine months old, the son of Amanda and Kurt Pfeiffer, Kohen exhibited symptoms at birth of the disorder, known as EB, in which the top layer of skin remains unattached, leaving Kohen susceptible to blisters from even the slightest friction.

Hours after his birth in August 2008, he was taken to Riley Hospital for Children in Indianapolis.

“(Kohen) was just like your typical child when he was here, in his car seat, kind of smiling at you and stuff,” said Tod Windlan, golf pro at Grandview Golf Course, where a benefit will be held for Kohen on Saturday. “You’d have never known anything was wrong with him.

“To see an innocent kid and he’s in a great amount of pain, it’s really gut-wrenching. I just hope this is going to be a successful benefit for Amanda and Kurt.”

Money raised at Saturday’s golf benefit will defray the costs of genetic testing to help Kohen’s parents care for him, as well as contribute to the fight against the disease.

Area businesses have donated concessions and prizes for the benefit, according to Amanda Pfeiffer.

Despite Kohen’s ailment, he remains a happy baby, Pfeiffer said.

“He has just the best personality,” she said. “He’s very happy, even though he deals with pain every day. But that’s all he knows. He’s not like you or me. He can smile through it.”

That pain can become too much even for Kohen to deal with, says Dr. Anita Haggstrom, a pediatric dermatologist at Riley and one of Kohen’s doctors.

“It is a condition where we’re pretty aggressive with pain control,” Haggstrom said of Kohen’s medications, which include doses of oxycodone. “We want the children to be able to achieve some sleep and be able to eat without being in pain, so they can grow.”

Also inhibiting their growth are almost constant infections from deflated blisters and open wounds.

“A lot of what happens is stuff he does to himself,” Pfeiffer said. “The older he gets, the more active he is, like any normal baby. Any time he rubs his eyes or rubs his head, it causes blisters.”

Amanda, an Anderson native, stays home to care for Kohen, assisted by her mom, Dawn Hensley. Kurt Pfeiffer, originally from Georgia, is a lineman with AT&T.; Kohen is their first child.

“Likely, we won’t have any more,” she said, “because you don’t know if it’s going to happen again. They say it’s hereditary, but nobody in my family or my husband’s family has ever heard of it.”

Although there is no treatment for the disease, Pfeiffer said she was still optimistic.

“We’re hopeful,” she said. “Some of these kids get better as they get older. Some of them learn their limitations. They know what not to do to make themselves worse. I really hope and pray someone finds a cure.”

Contact Rodney Richey, 640-4861, rodney.richey@heraldbulletin.com.



If you go ...

• What: Kohen Pfeiffer Golf Benefit and Raffle

• When: 2 p.m. Saturday

• Where: Grandview Golf Course, 1907 Northshore Blvd., Anderson

• Admission: $50 a person, including 18 holes of golf, cart rental, food, beverage and prizes (40 percent of proceeds are reserved for the EB Research Foundation)

• Information: 490-8740

• Web site: www.caringbridge.org/visit/kohenpfeiffer

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