By Andy Furman
Point/Arc
Julianna Trimbur is a nurse. And Sara Mead is her patient.
Perhaps her best patient. At least her most important one – Trimbur, who works and attends to Sara daily at The Bill and Betsy Scheben Care Center, 31 Spiral Drive in Florence has cared for Sara some 37 years.
Sara is Julianna’s daughter.
She suffers from Lissencephaly (pronounced li-suhn-SEH-fuh-lee), which means “smooth brain,” a spectrum of severe and rare brain malformations (abnormally shaped) that affects developing fetuses.
Sara Mead is 37 and is believed to be the oldest female in the nation suffering from Lissencephaly.
“The lifespan of a typical patient suffering from Lissencephaly is 10 years,” Trimbur said. “Sara wasn’t diagnosed until her second birthday with a CAT-scan.”
Children with Lissencephaly can develop severe physical and intellectual disabilities, have difficulty feeding, and have seizures, according to Trimbur.
“We noticed the seizures at five months,” Trimbur said. “There’s no cure and Sara is non-verbal.”
In fact, Sara weighed just 36 pounds when she was 10 years old, Trimbur remembered – she’s 90 pounds now.
“And,” she added, “At 10, we placed a ‘G’-Feeding Tube in her. Within two-months she gained 20 pounds.”
Sara had a Lissencephaly ‘I’ genetic testing – and there was detection of Chromosome 17. “This happens in the first trimester,” Trimbur said.
Yet, mom says Sara is happy, easy-going, loves car rides and going to concerts.
“She likes movements and colors on TV. Disney and Netflix and music please her,” Trimbur said. As for talking, well Trimbur says, “she pretty much babbles like a baby.
“She’s profoundly delegated, like a three-to-nine-month-year-old child.”
As for medications, Trimbur says there are three different seizure meds. Seizures come anytime, daily. “They’re pretty much under control now; perhaps just a few a week,” she said.
A day-in-the-life of Sara Mead — and mom – includes a trip to the Scheben Care Center around 9 or 10 a.m. – Monday through Friday. They’ll leave between 2-3 in the afternoon.
“She loves sensory toys, likes to manipulate with her hands, loves light, loves her pom-pom and balloons,” mom said.
Sara Mead lives in the Hancock House in Alexandria – one of 16 residential homes owned and operated by The Point/Arc. A total of six reside in the home – with 24-hour Direct Support Professionals living with them.
“I take her home on weekends. In fact, we just vacationed in Florida together,” Trimbur said. “Sara even has a beach wheelchair.”
Julianna Trimbur gave birth to Sara when she was 21-years-old.
“I was divorced when Sara turned two, so we’ve been together for the long haul,” she said. “I make sure Sara has a good life. I know she’s living her best life.”
Lissencephaly is rare. Researchers estimate that it affects about one out of every 100,000 babies.
Life expectations are usually about 10 years. Truly, Sara Mead is one in a million.
The Bill and Betsy Scheben Care Center, part of The Point/Arc of Northern Kentucky, is dedicated to the mission of helping adults with disabilities maintain their ability to function in the home and the community. The Scheben Care Center provides respite for families and caregivers to reduce the physical, emotional and financial stress experienced during long-term care.
The Center serves persons over 16 years of age who have medical;, physical, social and/or cognitive disabilities. The Center also offers Medicaid Transportation services to not only the facility, but to a number of other facilities in Northern Kentucky.
My son had the same syndrome he passed away 5 yrs ago he was 25 1/2 yrs old . He loved music and Disney channels he loved watching Mickey Mouse.