On May 21, 2012 little Lucas Patrick Hardman of Avon Lake would have celebrated his first birthday.

Nicole and Brian Hardman’s first child died only five weeks after his birth providing his parents with only a few short weeks of happiness. Lucas was born with epidermolysis bullosa (EB). According to the National Institute of Health, EB is a rare, genetic skin disorder that can vary from minor blistering of the skin to a lethal form involving other organs. The condition generally starts at birth or soon after.

A website dedicated to Lucas, love4lucas.com, tells the harrowing story of the baby’s first week of life.

“Within a few hours of his arrival, doctors became concerned with the fragility of his skin and nails,” the site said. “Lucas’ skin began to blister in his diaper area and the next day he was transferred to Rainbow Babies and Children’s Hospital in Cleveland. The small little baby was put in the NICU, where his skin continued to blister and break down. By the time he was a week old, Lucas had formed blisters on his entire diaper area, lower back, and parts of his chest. His tiny hands had to always be covered for fear that he would scratch himself and cause more skin damage.”

After a month of grueling treatment he took a turn for the worse on June 24 and he soon died in his mother’s arms.

Aware of the pain the disease can cause, the Hardmans are determined to help the families of those suffering from EB as well as the disease’s victims. That also means bringing awareness to what the Hardman's call "the worst disease you never heard of."

Quinn Rosalie Seymour of Stow suffered a similar fate last month and died 8 months after birth.

"Our Love For Lucas fundraiser is a night to raise funds and spread awareness in the battle against EB," Nicole said in an email. "We firmly believe that part of the reason we were lucky enough to be chosen to be Lucas' mom and dad was to tell people his story of courage and love, and to spread awareness of this horrible disease."

That belief started on the the day of the diagnosis.

"Brian told me the day that Lucas was diagnosed, and we were told he was terminal, 'Lucas is going to be the first one cured or he's going to help find a cure.'" Nicole said. "Lucas has taught so many people about EB, and spreading awareness is the first step to finding a cure. Our mission is to create a world free of EB so that one day no child ever has to suffer the way our little Lucas did."

Bowling Benefit is May 12

On Saturday, May 12, a benefit will be held with proceeds going to Debra of America, an organization founded in 1980 by Arlene Pessar of Brooklyn, NY, whose son was born with EB. Frustrated with the lack of available medical information on the disease, Pessar began researching the disease. The organization’s mission is to not only fund research for EB but also provide medical, emotional and financial support for families struggling with the day-to-day hardships of life with EB.

Supporters can join Nicole and Brian at Avon Lake’s Spevock’s Nautical Lanes at 5:30 p.m. on SaturdayIn addition to a night of unlimited bowling, shoe rental, pizza and pop, participants can purchase raffles and bid on silent auctions.

Tickets are $25 per person; children age 10 and under free. To purchase tickets or learn about sponsorship opportunities, click here If you would like more information about the event, email Brian and Nicole Hardman at LoveForLucasEB@gmail.com.