We heart Harlie: 9-year-old Harlie Holton of Glen Allen inspires neighbors to support medically fragile children. (Photo by Chris Smith)
Harlie Holton was born in September 2006 with a host of medical problems so long and unpronounceable that even her mother forgets to mention some of them. Primarily her heart is backwards, she is missing a lung lobe and some of her jawbone didn’t fully form. She struggles to breathe and swallow. “This isn’t like Down syndrome, where it has a name and everyone knows what it is,” says Harlie’s mom, Christy Holton.
Harlie is a smart, funny and active 9-year-old who has attended school, gone on frequent family camping trips with her two brothers and learned to ride a bike with training wheels — all while trailing an oxygen tank and stopping for tube feedings. In her active life, Harlie has already had about 50 surgeries with many more to come.
For Harlie and other medically fragile children, insurance doesn’t fully cover myriad costs their families face. Those costs include travel and staying in hotels for surgeries with specialists; physical therapies; sign language training for children who can’t speak; wheelchair-friendly vans for transportation; and handicapped-accessible bathrooms.
This is where Harlie’s community in Glen Allen picked up the slack, creating We Heart Harlie and Friends, a foundation that benefits six local families with children who have complicated medical needs.
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Harlie Holton with her family. (Photo by Chris Smith)
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The 2015 We Heart Harlie and Friends 5K and Kid’s Mile. (Photo courtesy Paige Steven Photography)
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One of the many kid vendors at the 2015 event. (Photo courtesy Paige Stevens Photography)
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Lynda Reider with Harlie and Morgan and Peyton, two of the other children the nonprofit supports. (Photo courtesy Paige Steven Photography)
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Harlie and her dog at Deep Run Park. (Photo by Chris Smith)
The group looks like it’s simply friends helping friends, and that’s why it is so powerful. In the same way that “shop local” and “eat local” movements are strengthening small communities, “give local” can pull people together to support their neighbors.
It is a model that Foundation Executive Director Lynda Reider hopes other communities can replicate.
“We’re here for the people who may not even know what’s wrong with their kids, and there’s nowhere else for them to go” Reider says. “Not necessarily for the child with cancer, for example, because there are so many cancer support groups out there.”
Reider launched the effort with a neighborhood fundraiser after getting to know Christy Holton in fitness classes at their local YMCA. Reider had worked in marketing at AOL, but left in 2006 to raise her twin girls. Talking to Christy, she learned that traveling to Boston for a series of surgeries would put financial hardship on the Holton family. “I just wanted to help,” Reider says.
And so she did. That first fundraiser in 2012 has grown into a series of events including an annual spring kids 5K race, a Halloween fundraiser, a summer golf tournament, a December “parents’ day out” for holiday shopping, and T-shirt sales. We Heart Harlie and Friends is now a 501(c)3 nonprofit.
“Any time a connection is local and you can see where the dollars are helping, it adds more meaning,” says Robert Allen, managing partner at Capstone Financial Partners, which has financially supported the Foundation for three years. “It encourages people to give even more because they can see their dollars at work.”
We Heart Harlie and Friends helps families in a variety of ways. For the Hayes family, help came in the form of a bathroom remodeling.
At age 14, Alex Hayes was just recently diagnosed with a rare syndrome called Grin2B – a mutation on her 12th chromosome. She is confined to a wheelchair, and can only use her wide, friendly smile and raised eyebrows to communicate, signaling “yes” or “no.” Until recently her father carried her up and down stairs from her bedroom to bath. The bath had a shower, but it wasn’t large enough for two, and as Alex grew, only her father was strong enough to manage bath time.
“The bigger she gets, the bigger her equipment gets and the heavier she gets,” says Alex’s mother, Donna Hayes. “Before the remodel, I hadn’t been able to bathe her for at least two years.” The family’s insurance allowed $3,000 to accessibly update a bathroom on the same floor as Alex’s bedroom — a renovation that cost $14,000 even with a generous discount from the family’s contractor.
“It’s so frustrating when you have a medically fragile child and you have to jump through 4,000 hoops of insurance denials,” Donna says. “That almost becomes your job.” She works part-time to keep her family insurance coverage. Many families lose significant income, as one parent frequently opts to scale back or stay home to care for the child and research complex medical decisions.
We Heart Harlie and Friends raised $11,000 for the Hayes’ bathroom work. “That was life-changing for our family,” Donna says. “That bath time together was something I had missed. Now she rolls right in, there is room for me to help, and the shower head comes down so I can spray her.”
The Foundation isn’t just about providing equipment, therapies and travel. The “friends” aspect of the group also helps build awareness and community acceptance for children who often look, sound and act differently from most of their mainstream schoolmates. Which means they get a lot of stares.
When Harlie was in kindergarten at Glen Allen Elementary, one of her home tutors suggested that her mother make a book with Harlie’s story and photos to hand out to her classmates. “That way they could stare all they wanted in private, and get used to her look,” Christy says. She received a Foundation grant to print 35 books at a cost of $360.
After reading the book, the students responded, integrating Harlie more into the class. Then, about three months into the school year, a new girl joined Harlie’s class. She took one look at Harlie and started crying. The next day Christy sent a book to school for the new classmate, which she says completely changed the dynamic. “Harlie was perfectly fine with her from then on,” Christy says.
Harlie and her friends have become minor celebrities. Supporters around the world post pictures of themselves on social media wearing their Foundation T-shirts on surgery days. “We’ll be at the mall and someone will say, ‘Hey Alex,’ ” says Donna. “We smile and wave, and then I’ll ask my husband who that is and he has no idea.”
Building awareness, acceptance and support is deeply powerful when it starts on such a personal level. “A lot of the reasons people give when I ask for a donation is because it is personal,” Reider says. “People are more involved because they know these families.”
Reider has joined development and training group Leadership Metro Richmond to network in order to grow the Foundation. She eventually wants to help others replicate the success of We Heart Harlie and Friends. “This concept can grow, one community at a time,” Reider says.
For more information visit weheartharlieandfriends.org.