By allowing ads to appear on this site, you support the local businesses who, in turn, support great journalism.
Benefit to help infant with rare brain condition
20-month-old Kate Hall needs unique treatment
Kate Hall Web
Elizabeth "Kate" Hall - photo by Special to the Herald

Elizabeth "Kate" Hall entered the world on Aug. 30, 2015, and Margaret Hall, Kate's mom, remembers thinking, "Kate is the epitome of a perfect baby."

About her third child, Hall said: "She never cried; she didn't get upset. She slept a lot, and when she was hungry, she'd make a sweet little yelp like a puppy."

At first, Hall thought maybe it was the new experience of having a girl; Kate's older siblings are both boys.

"I didn't have the exhaustion I'd had with the other two newborns. My house was clean; the laundry was done. Dinner was cooked. Kate never cried and by four weeks was sleeping through the night," she said.

When Kate was just two weeks, though, Hall became somewhat suspicious of the perfection.

"Something just doesn't seem right," Hall told her husband.

In the beginning, doctor appointments revealed nothing unusual. Her happy demeanor and unending smiles portrayed a healthy, content baby.

Kate was particularly quiet for an infant. Hall said that on several occasions, Kate was so unusually quiet in her car seat that Hall would have a momentary fear she'd accidentally left the baby at home and would have to glance in the mirror to make sure she was there.

"She was just the quietest baby, except for this one night," she said.

Hall relayed the night when her family portrayed Mary, Joseph and baby Jesus in a re-enactment called "Journey to Bethlehem" for their church, First Baptist of Statesboro.

"That night, she was so happy, and she just cooed and cooed," Hall recalled. "We found out that lights were her thing. She was attracted to the lights that were on the manger. That was the most outgoing she'd ever been."

A diagnosis, finally

But Hall's motherly intuition recognized subtle developmental differences between Kate and the boys, and she made additional doctor appointments to seek answers.

When Kate was referred to a neurologist, she was diagnosed on Jan. 14 at just over four months with the rare condition of lissencephaly with pachygyria, hypsarrhythmia, and infantile spasms. Kate's brain is smooth and doesn't have the folds and wrinkles of a non-lissencephaly brain.

The neurologist told Hall and husband, James, that Kate had been having frequent, unnoticeable seizures. The disorder is so rare that the doctor had only seen a couple of other such cases.

Understandably, the Halls were devastated with the news, and it took some time to absorb the ramifications.

"I had a time where I was upset and questioned God," Hall said. "But Kate has been just amazing. God has given us Kate for a purpose. She's definitely not a burden by any means. Yes, it's hard and tough, but the gift is so much bigger."

Since the diagnosis, Kate has been attending physical, occupational and speech therapies, as well as taking part in the "Babies Can't Wait" program. For Kate to remain healthy and seizure-free, she goes to numerous doctors' visits and therapy appointments regularly.

"We were told a lot of things - life expectancy from two to 10 years; she'd never walk, never talk. But, the doctors only know what's been documented thus far. If you read the definition, it's from the 1970s.

"Kate's already doing way more than they told us she could do, so my goal is to change that definition one day," Hall said.

Hall's strong faith matches her love and devotion for her perfectly wonderful daughter, and the family faces daily challenges and joys.

"She started rolling over from her back to the front two weeks ago," Hall said.

Twenty-month-old Kate now sits with help from a "supported sitter."

God's plan

Hall believes that God has used her daughter's diagnosis to help her reach out to and support other moms in similar situations.

"I've met so many people just through Kate," she said. "We support each other through an online Facebook page."

In addition to her ongoing therapy sessions, Kate will receive an intense therapy procedure in California in September.

"The NAPA Center is the only one in the country to offer this," Hall said. "She wears a neurotherapy suit to stimulate her brain."

Kate will receive therapy five days a week for three weeks, and the family - mom, dad and brothers Max, 7, and Jack, 6 - will accompany her to California.

A benefit to help offset the cost of the trip takes place Friday night at the Gene Bishop Field House from 6-11 p.m.

Music will be provided by Stewart and Winfield and food by Statesboro's Bubba Hunt. Barbecue plate dinners cost $30, and T-shirts and decals will be available for an additional cost. A silent auction includes four tickets to a Cole Swindell concert, various paraphernalia and many other items.

Tickets are available at Sea Island Bank, Matthew Tyson - State Farm and Heritage Bank. For more information, visit the "CelebrateKateBenefit" Facebook page.



Sign up for the Herald's free e-newsletter