In a few months, Lisa Higgins will kick off the annual Dare to Dash 5K and Family Fun Day in Norcross.
It will be the sixth year she has hosted the event, and if the past five are any indication, this one will be another rousing success. To date, Higgins, 41, has raised nearly $300,000 on behalf of Children’s Healthcare of Atlanta and the Ainsley Paige Higgins Dare to Hope Foundation, the organization she founded in honor of her daughter.
She has helped to provide Christmas gifts to 500 sick children and has raised public awareness of the challenges they face.
“This is not what I originally intended to do with my life, but I’m so glad it’s what it’s turned out to be,” Higgins said recently at her home in Duluth.
Dr. Jeffery Klick, director of pediatric palliative care at Children’s Healthcare of Atlanta, credits Higgins with helping families of children with severe illnesses become their own advocates.
“She’s really organized this group of people into a network and has empowered them to help each other and to help their kids,” Klick said.
When she graduated in 1996 from IIT Chicago-Kent College of Law, Higgins’ dream was to become a prosecutor and make the world a better place. Instead, she ended up doing civil litigation.
That was her life for nine years. Then she and her husband, Matt, a Georgia Tech business professor, welcomed baby Ainsley into the world and their lives changed.
At just 4 weeks, Ainsley began having seizures, and soon after that doctors diagnosed her with mitochondrial disease, a rare genetic disorder. For more than 100 days a year, she was in the hospital. By the time Ainsley was 4, she was being fed through a permanent IV inserted into her chest. Five times, she had to relearn how to walk.
Meanwhile, Lisa and Matt met and talked with families who were fighting the same fight, only with fewer meaningful results.
“We were lucky that we were able to get resources we needed,” Higgins said. “But many didn’t have the extra $200 to get someone to help with paperwork or fight the insurance companies when they wouldn’t pay.”
Higgins discovered there were plenty of organizations in search of a cure for rare disorders such as mitochondrial disease, but few sought to improve children’s quality of life, to stand in the gap while they were still alive and fighting.
That’s what Higgins decided to do, and in June 2010 she officially launched the Dare to Hope nonprofit that bears her daughter’s name.
Early this year, Higgins said, Ainsley was admitted to the hospital once more — this time for a simple surgical procedure to insert a tube into her intestines to relieve pain associated with her lack of mobility. Six hours later, she went into shock. Her kidneys shut down and her body started eating her red blood cells.
“Every time before they’d been able to stabilize her,” Higgins said.
But the little girl who loved Elmo and Cookie Monster, loved kids and animals, and who never spoke a word but whose big hazel eyes could let you know what she wanted, decided she didn’t want to fight any more.
Higgins’ inspiration was dead.
It was May 9, 2012, but by then Higgins’ feet were firmly on the path set by her little girl.
“Here I am helping hundreds of kids,” Higgins said with tears in her eyes. “She and I have changed so many people’s lives.”
To donate, sponsor a child or sign up for the race, log onto www.dare-to-hope.org, www.daretodash.com or call 404-451-0917.