The Kahn family is in the fight of their lives. It’s a fight against time. When the diagnosis came back a few months ago, life as they knew it ended.
The Kahns’ twin daughters, Amelia and Makenzie, 7, both have been diagnosed with Batten Disease, a rare genetic illness marked first by rapid vision loss and then seizures and total motor loss. There is no cure.
“The medical world doesn’t put a whole lot of priority on these small and rare diseases, so it’s important that each family do their part to raise awareness,” says David Kahn ’97, Amelia and Makenzie’s father.
“Yes, it comes from the families,” adds David’s wife, Karen. “Because there’s no cure and no parent is willing to accept that. So we need everyone working together to fight the diagnosis.”
The Long Road to Now
Amelia’s medical journey began at just 18 months old, when she was evaluated for speech issues. By 2, she was misdiagnosed with autism. As time passed, she struggled with behavior issues. Then her vision began to suffer.
Last Thanksgiving, the Kahns took Amelia to Phoenix Children’s Hospital, where they learned she was legally blind. Then the retinal specialist told the Kahns, “I think there’s something connecting her behavior and her vision.”
She was sent to a geneticist. “Still, at that point I don’t think we realized what was coming,” Karen says. “In the meantime, Makenzie was reading a book and couldn’t see the words. It was yellow text on a red background. So we took her to the retinal specialist February 8. We were told she was legally blind. We knew then that Makenzie had the same diagnosis.”
That Friday, Amelia’s genetic results came back showing juvenile Batten Disease.
“That was numbing, to learn that they both had this disease,” David says. “It’s been a long few months.”
David and Karen are taking it day by day. They have strong family support. They’ve assembled a bucket list of things they want to do with their girls. And they’re encouraged by the fact that researchers are working on a cure.
“It takes a village, as they say,” David says. “Hopefully this article helps spread awareness. We’re in a vulnerable spot, but we’re trying to keep focused on making a difference, one minute at a time.”
The Kahns have set up their own foundation, the ForeBatten Foundation, to fund research teams they feel have the most potential. To learn more or to make a donation to fund this research, visit forebatten.org.