Gina Hann walked into her son’s kindergarten class wearing zebra stripes and armed with enough black-and-white snack cakes to build a small fort. It was national Rare Disease Day, and Gina, an...
Gina Hann walked into her son’s kindergarten class wearing zebra stripes and armed with enough black-and-white snack cakes to build a small fort.
It was national Rare Disease Day, and Gina, an engineer at our company, was on a mission to talk to 6-year-olds about rare diseases. She explained why a zebra – a term in medicine that indicates an unlikely diagnostic possibility – is the perfect mascot for children like her son, Joseph, who was diagnosed with a terminal and degenerative brain disease in 2017.
“When you ask small children what makes a rare-disease child different from them, they give you beautifully candid answers,” Gina said in a blog post. “Things like: ‘He has a wheelchair. He drools. His words sound different. His eyes don’t work.’ Those statements hold no judgment, just honesty.”
As the mother of that rare child, Gina took the opportunity to turn her son’s challenges into a celebration of differences.
“When you ask small children what makes a rare-disease child the same as them, they celebrate the discovery,” she said. “He loves music, and instantly they sing with him. He loves laughter, and they all laugh with him from their bellies. I think kindergartners should rule the world.”
For Gina, good days like these make the difficult fight worth it. Since learning about her son’s disease, Batten, she has been on a nonstop journey to bring hope to other families dealing with a similar diagnosis and to make gene therapy for rare diseases more accessible. Initially, she and her husband, Matt, were told to make end-of-life plans for Joseph since no clinical trial or funded research existed to find a treatment.
“We didn’t know it then, but Joseph’s story was just beginning,” she said.
‘A relentless process’
Gina and Matt were told that if they wanted a clinical trial for their son, they would need to fund the work themselves, and that would mean raising a million dollars or more just to cover the first steps before a clinical trial could be developed.
Ever the engineers and problem-solvers, Gina and Matt searched for a solution. They founded Joseph’s Foundation for Batten Hope, a nonprofit organization dedicated to raising funds toward a clinical trial for a potential cure and gene therapy work at The Children’s Medical Center of Dallas and University of Texas Southwestern Medical Center.
“Matt and I challenge ourselves to innovate and work for better outcomes by the nature of our jobs and our work environment at TI,” Gina said. “We knew to ask if there could be more out there, to question everything and to always look for what’s next. That’s why we felt compelled to choose the path we did – it was a relentless process, but our work helped to make us uniquely suited for it.”
Gina and Matt have helped raise more than $1.5 million and have located over 20 other families around the world who are in need of treatment for their loved ones. Today, they’re working toward funding the final materials needed for the trial, which they hope will begin in early 2020.
“We don’t know if we’ll have the treatment in time to save Joseph’s life,” Gina said. “But no matter what, Joseph has inspired the work that can save the lives of countless others.”
Commitment to the rare disease community
Gina’s commitment to fighting rare diseases is expanding even further: She has joined efforts with other rare-disease family foundations in the Dallas area to establish a new nonprofit called RARE Dallas, which is focused on connecting and empowering affected families and finding cures. As a result of her outstanding commitment to the community, she was recently recognized with our company’s TI Founders Community Impact Award, which honors our company’s founders and their long history of philanthropy and volunteerism in communities where we live and work.
“I think for a lot of parents, when the doctor tells them to make end-of-life plans for their child with a rare disease, they are so overwhelmed that they don’t stop to challenge if there could be other options,” Gina said. “We want to make it well known that just because a treatment hasn’t been developed yet, that doesn’t mean it can’t be done.”
Gina and her family are living proof that you can engineer your own hope.
“There is so much beautiful hope in this world,” Gina said. “Especially knowing that one day soon, the kindergartners will run the place.”
To stay updated on Joseph’s story, follow Batten Hope on Facebook and Instagram
