When a Morgantown family found out their newborn daughter had a rare form of epilepsy, they didn’t know where to turn.
In the two years since, they have received support from all over the world.
Fynleigh Zimmerman suffers from Aicardi syndrome, a condition that affects about 4,000 people worldwide, according to the U.S. National Library of Medicine. The condition, which affects predominantly girls, is a childhood ailment that 900 Americans, including six other Hoosiers, face.
Due to the condition, Fynleigh was born without her Corpus Callosum, the part of the brain that integrates motor, sensory and cognitive performance. Fynleigh, now two, was also born with three benign tumors in her brain, one of which grew from the size of an almond to the size of a tangerine within two months, and she had to have emergency brain surgery to remove it. She also has frequent seizures, said James Zimmerman, Fynleigh’s dad.
The rarity of the disease made the Zimmermans feel alone during the first few months of their daughter’s life, he said.
“My daughter has to fight this her whole life, and I’ve come to terms with it,” James Zimmerman said. “What I have trouble with is 99 percent of people have never heard of this, and for no one to know about it, got me out there campaigning for it. Seizures are the biggest effect. There’s gross motor delays, and educational and developmental delays. The life expectancy is eight to 18 years; some make it to adulthood, most do not.”
Since Jan. 13, 2017, when Fynleigh was born, she’s been to the emergency room 40 times, and has spent 67 days in the hospital. The family has split their time between Peyton Manning Children’s Hospital in Indianapolis and Children’s Hospital of Michigan in Detroit for treatment.
Her symptoms are improving. Until March, she was having three or more seizures every day. Since March, she’s had 10 total thanks to the anti-seizure medication she’s now on, James Zimmerman said.
“It’s heartbreaking. She’s such as happy kid. If she’s not sick or having seizures, she’s the happiest little girl you’ll see. When she’s not on her ‘A’ game and happy, it tears us apart. She’s always got a smile on her face unless something’s wrong, and if she doesn’t smile and interact with you, you know she’s likely about to have a seizure," James Zimmerman said.
When the Zimmermans took to the internet for advice and help coping with their daughter’s condition, they discovered an Aicardi support group on Facebook. The group has 1,450 members from all over the world. Through the group, the Zimmermans have made connections with people not just in the United States, but from Scotland, New Zealand, Australia, Mexico, Canada, Great Britain, Japan and countries in South America, all dealing with similar circumstances, James Zimmerman said.
The Zimmermans, who are also raising five other children, four of whom go to Indian Creek schools, want to attend the 2020 Aicardi Syndrome Family Conference in Las Vegas, where they’ll be able to meet many of the people they’ve talked to in the Facebook group, he said.
“I think hearing their stories helped us tremendously,” James Zimmerman said. “Until she was diagnosed, we knew she was missing part of her brain, but we felt like we were on an island. We felt it was just us out there.”
The family is also raising awareness by donating pieces of Fynleigh’s tumors to medical schools for research. Even at two years old, her life is a miracle, Cassandra Zimmerman said.
“Her life has been a miracle from the very beginning,” Cassandra Zimmerman said. “Everyone at the hospital knows her by name. They say, ‘I’ve never met a person like her before in my life.’”
