Tribune-Courier News Editor
LEDBETTER – Four weeks ago, Olivia LeeAnn Hack seemed as healthy as any other 4-month old. But things changed quickly for the daughter of Erin Smith, of Ledbetter, and Rob Hack, of Briensburg. Concerns grew as she began having seizures, leading doctors to diagnose Olivia with Aicardia syndrome, a rare genetic disorder.
The life expectancy of most Aicardia patients is two years.
“She started having seizures Aug. 10,” Smith said. “We took her to the emergency room that day and she was at Kosair Children’s Hospital that night. They haven’t slowed down since. They’re getting worse and worse all the time. With every seizure I lose a little bit more of her.”
Olivia will be 5-months old Sept. 13. She was diagnosed with the disorder Aug. 11, the same day Smith said she found out she was pregnant a year ago.
Seizures are one of the primary symptoms of Aicardia. Coloboma, a hole in the eye, and developmental delays are also concerns. The corpus callosum, which connects both sides of the brain together, is effected by the disorder, being either partially or completely missing.
Olivia also has a lump and cysts on her brain. Cerebrospinal fluid is leaking out from the cysts, making bigger pockets and damaging the good parts of Olivia’s brain.
Aicardi syndrome only effects females, as it can be traced back to a defect in the X chromosome. Estimates are that Olivia is one of less than 800 cases in the U.S.
“She’s in palliative care,” Smith said. “We just keep her comfortable and that’s all you can do. We’re doing physical therapy and occupational therapy. But she’s so small. There is no cure. She doesn’t do much except for sleep and cry and have seizures.”
Olivia can have in excess of 20 seizures a day. Her mother keeps a notebook charting frequency and duration.
Smith said family tries to focus on keeping Olivia comfortable.
“She gets scared more than anything,” Smith said. “She always wants to be holding somebody’s hand. She will get irritable when she’s about to have a seizure. I guess she can feel it coming.”
Smith has had to take Olivia to Kosair twice. Another trip is being planned in the coming weeks and regular monthly visits are ahead as doctors try to treat the disorder. Currently, Olivia is on five seizure medications. One of them has to be paid for out-of-pocket.
To make matters more difficult, Smith said her vehicle broke down two weeks before giving birth. She’s had to borrow transportation for Olivia’s trips to Louisville. Smith currently lives in Ledbetter with her parents Bruce and Kim Lyles.
To help with costs, friends and family will host a fish fry fundraiser Oct. 16 at the senior center in Grand Rivers. Live music and a silent auction are planned. Tabs from aluminium cans will be collected for the Ronald McDonald House, as well as any funds
Smith said she hopes people will come out and celebrate Olivia’s life. A time has not been set, but the event will most likely be held in the afternoon.
“Pray that whatever God’s will is be done, and whatever purpose her life can be to be fulfilled” Smith said. “Love your kids. Even on good days or bad days because you never know. Just pray and kiss your kids.”
For more on the fundraiser, phone Smith at 217-1673.