For the love of Lucas: Through the loss of their son, a young couple fights for other families

Avon Lake

By Bryan Wroten

A year ago, Nicole Hardman was nearing the end of her pregnancy, which had gone by without complications.

A year ago, she and her husband, Brian, had never heard of epidermolysis bullosa (EB), the disease that would upend their world and later claim their son’s short life.

A year ago, Brian and Nicole Hardman had no idea they’d be planning a fundraiser in memory of their son in hopes that, in the future, no parent and no child would ever have to go through what they did.

“Brian and I firmly believe part of the reason we were lucky enough to be chosen to be Lucas’ parents is to spread awareness about EB and this disease,” Nicole said. “This is our mission now – to spend the rest of our lives fighting for these kids and telling people about EB, and telling our baby boy’s story.”

Life with EB

Lucas Patrick Hardman was born May 21, 2011, at St. John Medical Center. His doctors and parents saw blistering on his skin, leading the doctors to diagnose him with epidermolysis bullosa, specifically Junctional Herlitz. EB causes severe blistering and erosion of the skin. The Junctional Herlitz variety means the blistering occurs externally and internally. Life expectancy, at most, is two years.

As it turned out, Brian and Nicole are both carriers of the gene that causes this form of EB. It’s rare. There is only about a 1 in 2.5 million chance of being born with the genetic disorder, and the two grew up about three blocks from each other in Avon Lake.

Brian and Nicole quickly had to become experts at caring for their newborn and his special needs. Movement led to rubbing, which would cause blistering, even from just skin against skin. They learned how to drain his blisters with an 18-gauge needle to prevent infections. Brian taped pads to Lucas’ hat so his son’s ears wouldn’t rub when he turned his head. His entire body, except for his face, was covered in dressings. Only lambskin was soft enough to touch his skin without much friction. He had to wear mittens or socks on his hands to keep him from scratching himself. He could only drink from silicone nipples because other types weren’t soft enough.

Changing diapers was an experimental process. His parents could only use cloth for Lucas, and because baby wipes contained alcohol, they had to soak gauze or baby washcloths with mineral oil. His parents bathed him every other day to prevent infection, but even that caused pain.

“I could not hold my own child without hurting him,” Nicole said. “Every hug, every touch, every kiss was pain. And I do think he had some content moments, and he had a lot of really hard ones, too.”

One way Brian could soothe Lucas was by playing his acoustic guitar. Lucas would stop crying and stare at Brian while he played, Nicole said. When she was pregnant, Lucas would kick anytime Brian played close to her.

What amazed her about Lucas was on difficult days, when she and Brian were upset because they could not comfort him, they’d see him watching them.

“He was sitting in his napper, content, staring at us with his big, blue eyes, almost as if saying, ‘I’m OK, Mommy. I’m OK, Daddy. This is OK.’”

Despite their hard work, Lucas’ health worsened. He stopped eating, and his lungs shut down. New Life Hospice helped the family make Lucas comfortable at home. He passed away June 24, 2011, in his parents’ arms.

The following months

“It’s been rough,” Nicole said. “We have days we’re really sad, days we’re really angry, a lot of days we don’t understand why, days we don’t understand why the disease exists and children have to suffer like they do.”

But they also know Lucas isn’t in pain anymore, and that helps some. He went through more pain in his five weeks of life than most adults do in their lifetime, Nicole said, and it’s a blessing his suffering ended as quickly as it did.

The holidays were hard. It would have been their first December as parents, she said, but they had no baby to open presents with, to show the tree to or teach about Santa Claus.

“It is sad, and it is depressing, and it is personal and private, but this is what the disease does,” Nicole said. “Brian and I are not afraid to let other people in if it will help others.

“I mean, it’s hard – no parent should ever have to lose their child, but I would rather him be in a better place, not in that pain anymore, than for me to be able to hold him again, wrapped up in those bandages.”

Talking about Lucas helps them, she said. People seem afraid to bring him up because they worry it will make her and Brian sad, but she said they don’t need to avoid him.

“He was here, and he was a big impact when he was here, so we talk about him,” she said.

They laugh at the funny stories. They light a special candle for him on special occasions. On his first birthday, May 21, there will be a cake. They will sing to him and bring balloons and flowers to him at the cemetery.

His parents planted a tree in their front yard for him, visible from his nursery window. They added a stone engraved with his initials and a butterfly. Nicole wears a locket with his pictures and had his footprint and name tattood on her leg.

They called him a “little monkey man” because of all the hair he had when he was born. After waking up from a nap, they’d see him poke his arms and legs out in the air. At night, Nicole sleeps with the stuffed monkey they gave their monkey man.

The Hardmans’ other comfort is their niece, Izzy, born just a few weeks after Lucas. Nicole believes her son is Izzy’s guardian angel. She smiles at the mention of his name and loves his favorite lullaby, “You Are My Sunshine.”

Lucas has his own way of consoling his parents, they believe. Children with EB are sometimes called butterfly children because of how delicate their skin is.

“I can’t count the number of times we have been thinking about him or talking about him and a butterfly will just appear,” she said. “We had other people around when this happens, so I know I’m not crazy. He sends us butterflies all the time.”

In his memory

Following Lucas’ death last year, friends and family of the Hardmans put on two fundraisers to help the parents with medical bills and other expenses.

Following the story The Press ran about Lucas in its July 13, 2011, edition, the Hardmans saw a community come together to support them.

“We got cards and letters every day for weeks and weeks and weeks after his story went out,” Nicole said. “My husband and I grew up in Avon Lake. Avon Lake really is home for us. The people of Avon Lake showed just how much they cared about their own.”

The family received cards and checks from people they never met. They regularly received letters from the Dystrophic Epidermolysis Bullosa Research Association (DEBRA of America) that a donation was made to the organization in Lucas’ name. People read about Lucas and wanted to help the fight against EB, she said.

The Hardmans were overwhelmed by the support from friends, acquaintances and total strangers.

“We’re so thankful for the kindness, generosity and support we are being shown by people,” she said.

DEBRA is the only nonprofit that provides a resource for families suffering from EB, Nicole said. It uses its funds for researching cures and helping families afflicted with the disease. The cost of supplies, from specialized bandages to pain medication, can cost a family $10,000 a month, she said. DEBRA also has a new educational program, offers a nurse to speak with at any time and sends out care packages with essential EB products after learning of a child born with the disease.

For his legacy

Now the two want to give back and share the support they’ve received. Brian and Nicole have taken the name from their second fundraising event, Love for Lucas, and are turning it into a way to raise money for DEBRA to go toward EB research and to help families of EB patients.

The Love for Lucas fundraiser will be a bowling party held at 5:30 p.m. May 12 at Spevock’s Nautical Lanes. The cost is $25 a person, and children 10 years old or younger can enter free of charge. The price includes unlimited bowling, shoe rental, pizza and pop. There will also be raffles and silent auctions. They plan to sell DEBRA bracelets and T-shirts as well.

“It’s a night to spread awareness and raise as much money as we can for DEBRA,” Nicole said.

Those interested in attending can purchase tickets by e-mailing LoveForLucasEB@gmail.com. DEBRA’s website will also sell tickets under its local events page. The family is also looking for sponsors for the event. It is their goal to turn Love for Lucas into a full 501(c)3 nonprofit.

There is a Facebook page, Love for Lucas Benefits, and there will be a website, www.love4lucas.com, going live this week for the organization that will display his pictures and some video, share his story and provide information about EB and DEBRA.

To add to their fundraising efforts, the Hardmans put up a song on iTunes and Amazon.com, the proceeds from which go to DEBRA. Brian is a musician and wrote a song for Lucas while he was still alive. On the day Lucas died and his family was saying their goodbyes, Brian pulled out his guitar and had everyone leave the room. Lucas was the first to hear the song his father wrote for him, “Butterfly Child.” Later, Brian and his musician friends recorded the song, sent it to Nashville and had it professionally mastered. There’s a video on YouTube with pictures of Lucas set to the song under “Butterfly Child– Rob Duskey & Friends.”

“It summarizes the hell every EB parent goes through,” Nicole said, “Not wanting to say goodbye to a child. Not wanting to see them in pain every day.”

Life, by no means, has been easy for the young couple, but they continue to push forward. They met with and talked to other EB families across the state, country and world. The Hardmans traveled to Michigan last fall for Aubrey’s Butterfly 5K, a race honoring the memory of Aubrey Joy Oberlin, a 6-week-old girl who died Nov. 17, 2010, from the same type of EB that Lucas had. The walk raised more than $10,000 for DEBRA. The Oberlins and Hardmans connected after a friend of the Oberlins read about Lucas.

Thinking back over the past year, Nicole said it’s strange to realize that in March 2011, she and her husband had no idea EB existed, or that they would be in the middle of putting together a fundraiser to help other families. It’s been such a journey for them, she said. Sometimes it takes a tragedy to learn life’s purpose, she said, and hers is to spread awareness about the disease.

“There are still a lot of days that are a struggle,” she said. “We think about him every day, speak about him every day. We always wish he didn’t have to go through any of this, but we want to make him proud, and we want to make Love for Lucas worthy of such an amazing little man, and that’s what we’re going to do. We will do it every year, and every year we’ll get bigger and better.”

Contact Bryan Wroten at bwroten@2presspapers.com and www.twitter.com/bryanwroten

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