Kyle Hicks, 24, has a rare and painful skin disease called recessive dystrophic epidermolysis bullosa that causes his skin to be extremely fragile and talks about it in the 2015 video. He died on Wednesday, November 8, 2017. Kansas.com
Kyle Hicks, 24, has a rare and painful skin disease called recessive dystrophic epidermolysis bullosa that causes his skin to be extremely fragile and talks about it in the 2015 video. He died on Wednesday, November 8, 2017. Kansas.com

Local

Kyle Hicks defied lifelong skin disease to reach adulthood, attain degree

By Stan Finger

sfinger@wichitaeagle.com

November 08, 2017 08:49 PM

UPDATED November 09, 2017 09:03 AM

Kyle Hicks, who graduated from Butler Community College despite a rare and painful skin disease, died of cancer on Wednesday.

Hicks, 26, was born with recessive dystrophic epidermolysis bullosa, which made his skin extremely fragile and covered his body with blisters.

“He was never supposed to leave the hospital, and he did,” his mother, Jerree Hicks, said in 2015 Wichita Eagle story.

Bandages covered most of his small body. Despite being in his mid-20s, Hicks stood 4-foot-2 and weighed less than 60 pounds.

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But he earned an online degree in liberal arts and dreamed of working in a regular workplace one day. He wanted to meet Ellen DeGeneres and hoped to find work as an Americans with Disabilities Act compliance officer.

He received a bone marrow transplant in 2011 as part of a clinical trial. But his left arm was amputated at the elbow last June after cancer was discovered, according to posts on his Facebook page.

Hicks maintained his trademark optimism, joking on Facebook about sleeping through an earthquake and sharing photos of him enjoying the solar eclipse in August.

His funeral will be at 10 a.m. Friday at Congregation Emanu-El. A memorial has been established with Harry Hynes Memorial Hospice, 313 N. Market, Wichita, KS 67202.

Stan Finger: 316-268-6437, @StanFinger