Avon Lake parents hope to shed light on the 'worst disease you've never heard of'
Elizabeth Misson, newsnet5.com
11:30 AM, May 9, 2013
11:34 AM, May 9, 2013
AVON LAKE, Ohio - On May 21, 2011 Nicole and Brian Hardman of Avon Lake welcomed their first child into the world.
They named him Lucas Patrick, and like any new parent, shared in the excitement of their first born.
The excitement, unfortunately, was short lived as doctors noticed not long after his birth that the little boy with the beautiful blue eyes had very fragile skin and nails. Within a few hours, they discovered his skin beginning to blister in his diaper area.
Little Lucas was transferred to Rainbow Babies and Children's Hospital where he underwent treatment in the NICU. It was there that doctors diagnosed Lucas with Epidermolysis Bullosa (EB) a rare genetic skin disease. EB causes the body to form painful blisters where the skin and the body meet because the body is missing the "glue" that holds the skin to the body.
At first, the Hardmans were hopeful that perhaps Lucas had a mild form of the disease that could improve with age. However, they learned within a few weeks that Lucas had the most severe form of EB and that his life expectancy would be less than two years.
On June 24 2011, just five weeks after his birth, little Lucas Patrick Hardman died peacefully in his parents' arms, surrounded by his family.
Currently, there is no cure and no real treatment for EB, which is often referred to as "the worst disease you've never heard of." Nicole and Brian Hardman are hoping that Lucas' life, while short, will help change that.
On Saturday May 11, the second annual Love for Lucas Bowling Party will be held at Spevock's Nautical Lanes in Avon Lake. The goal of the event is to raise awareness of EB so that parents know what genetic testing is available to them and also to raise funds for the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA.org), which funds EB research and assistance to families with EB nationwide. More than 300 people attended the event last year and raised more than $30,000 for the organization.
Today, the Hardmans are parents once again, to a baby girl, Callie. Nicole Hardman said she credits the DebRA organization with helping them know what genes to look for to ensure that Callie would be a healthy baby.
WHAT: Love For Lucas (Benefit for DebRA.org)
WHEN: May 11, 2013,
TIME: 4-5 p.m. Family Bowl available, 5-9 p.m. all are welcome
WHERE: Spevock's Nautical Lanes, 184 Miller Road, Avon Lake, OH 44012 (440) 933-7008
TICKETS: $25 per person (Children 10 and under are free with the admission of a parent) - Ticket includes unlimited bowling, shoe rental, and a variety of refreshments including pizza and pop. There will also be Chinese raffles, silent auction and 50/50 raffle as well as Love For Lucas T-shirts available.
Despite Lucas's short time on the earth, the Hardmans' say that his impact on those who knew him was great. Nicole and Brian have a
website that includes information about EB and DebRA.org and tells the story of Lucas's life. They included the following message to their baby boy:
"Our baby boy, we love you more than words can ever say. We miss you so much and are so proud of you. You have more courage than anyone we have ever known, and to us you will always be the bravest person in the world. Mommy and Daddy love you so much Lucas."