Website raises funds for boy's medical bills

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It started out as a simple fundraiser among employees at the DoubleTree Hotel and Monroe-ville Convention Center for a co-worker's son who was born with cerebral palsy and visual impairment.

It has grown into a website that shares the story of the little boy's challenges and has raised more than $6,600 in less than a week, helped expand local awareness of cerebral palsy and encouraged his parents, Jody and Wendy Hornak of Wilkins, through the kindness of strangers.

Amanda Keesler, who works the front desk at the DoubleTree, said she was touched by the Hornaks' story and organized a raffle last month that brought in $275 toward Joey's continuing medical expenses. Still, she was left with the nagging feeling more should be done.

She knew the little boy's physical challenges weren't temporary.

"I felt that I could have done a better job getting the word out," Ms. Keesler said. "So I created a website ... in hopes of reaching out to more people. ... For the rest of his life, he will need things that medical insurance just won't cover."

As she built the web page, Ms. Keesler included a short letter Joey's mom had written for the raffle, explaining what these physical limitations mean for the 21-month-old with the blond hair and big smile.

"Hi, my name is Joey, my family likes to call me Jojo ... I have Cerebral Palsy and if you don't know what that means, I can't use my legs and arms like everyone else because my brain won't let me," Mrs. Hornak's letter began. "Mom and Dad are trying to get me a wheelchair so I have better support for my back, neck, legs, and arms but we aren't sure if insurance is going to cover the cost, so Mom and Dad set me up a 'Special Needs Trust' in case of any extra medical necessities we need to save for, whatever that means, parents are so silly."

It goes on to explain how "Jojo" has vision impairments and needs a feeding tube to eat due to an internal cleft palate and complications from the cerebral palsy that cause his body to sometimes malfunction, sending food into his lungs instead of his stomach.

Joey was born on Sept. 2, 2010 and the first signs that things were not as they should be included a low-grade fever and lack of movement in his left arm. Then, at 3 months, Mrs. Hornak noticed her son's eye looked "lazy" and unfocused and there were digestion problems. The formal diagnosis of cerebral palsy came in December 2011.

The Hornaks said early intervention from therapy has been critical. They are planning for special summer camps and special equipment. While this will make Joey's life more fulfilling, there is a cost, so they decided to open a trust fund.

"The journey has been long and hard, but also wonderful and rewarding," Mrs. Hornak said, noting that she cried when Joey's insurance-approved wheelchair arrived last week.

Along the way, the Hornaks have discovered a supportive community in family, friends, co-workers and even strangers.

"When the link was posted on Facebook ... it blew up into something we never really imagined," Mr. Hornak said.

The site has averaged raising between $800 and $1,000 per day since it went live.

"This is something you never think you will have to go through," Mr. Hornak, who is food and beverage director at the Double Tree, said. "It's hard to accept money from people you don't know. ... It's humbling to see people willing to give. It's also heartwarming to know that people are willing to care.

"A simple 'thank you' doesn't cover what this means to Joey and his future."

Details: www.indiegogo.com/joeyhornak?c=home

neigh_east

Pamela E. Walck, freelance writer: suburbanliving@post-gazette.com.


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