2nd 'Love For Lucas' Event Combats 'Worst Disease You've Never Heard Of'

It’s been almost two years since little Lucas Patrick Hardman of Avon Lake came into this world, blessing his parents, Nicole and Brian Hardman. He was able to provide his parents with only a few weeks of happiness before he succumbed to the effects of epidermolysis bullosa (EB), 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. There is no cure for the condition, known as “the worst disease you’ve never heard of.”

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.”

He died in his mother’s arms on June 24, just five weeks after his May 21 birth. (Read Lucas' story here.)

The Hardman's vowed to fight for a cure.

"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 last year. "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."

In May 2012, the family held the first Love For Lucas fundraiser. They raised more than $30,000 foe DebRA of America - Dystrophic Epidermolysis Bullosa Research of America.

DEBRA is the reason the Hardman’s are now the proud parents of 7-week-old Callie born on March 9, 2013.

“A lot of time when people donate it’s hard to see what your dollar does,” Nicole said. But all you have to do is look at Callie. She is living proof of the miracle that supporting DeBRA has brought.”

Thanks to the organization’s advancement, the Hardmans were able to know what genes to look for to make sure that Callie was healthy.

“You know you helped make a miracle,” she said. “EB’s research is possible because of DeBRA. She gets to do all the things Lucas did not get to do. Brian and I can cuddle her and kiss her and hold her close knowing it doesn’t hurt her.”

Second Love For Lucas Fundraiser

The second Love For Lucas fundraiser is set for Saturday, May 11, at Spevock's Nautical Lanes in Avon Lake. 

“Last year we were hoping for 150 people and to raise $5,000,” Hardman said. “We had 300 people show and raised $30,000.”

Families with small children are encouraged to attend our family bowl at 4 p.m. and all are welcome at 5 p.m.  Tickets are $25 per person and kids 10 and under are free. 

A ticket includes unlimited bowling, shoe rental, pizza and pop. 

The event will  feature raffles and silent auctions including an Amazon Kindle Fire HD and a 46" flatscreen TV as well as a one-week vacation rental in Florida. 

All proceeds raised will be donated to the DebRA.org.

Join us again this year for another night of bowling, food, and fun, all while helping us in our battle against the "worst disease you never heard of."  

Tickets can be purchased online at www.Love4Lucas.com or at the door the day of the benefit.