Saturday, January 26, 2008

Toddler receives help from community to fight seizures

Eighteen-month-old Sadie Stewart grabbed two brightly colored blocks and hit them together while bouncing in her sitting position.

Her mother, who sat nearby, stopped talking mid-sentence and her mouth dropped open. She leapt toward her daughter, clapping and saying, “Good girl!” She hugged her daughter tightly and smiled.
This was the first time Sadie did that on her own since before Sept. 25.

“You know how people say your life can change in an instant? Well, mine did change in an instant on Sept. 25,” said Sarah Stewart, Sadie’s mother, while holding her little girl in her lap.

Sadie is the second child for Sarah and Seth, of Jeffersonville. So, when Sadie had her first seizure in April of last year, her parents knew something was wrong.

They took her to Kosair Children’s Hospital in Louisville where she was diagnosed as having a febrile seizure — a type of seizure common in young children who are running a fever.

According to the National Institute of Neurological Disorders and Stroke, about one in 25 people will have such a episode in their lifetime. Sadie, who was 8 months old at the time, was sick and had a fever, and no one thought anything more of it.

The same thing happened again in early September. Again, Sadie went to Kosair and again she was diagnosed as having a febrile seizure.

But on Sept. 25, Sadie’s nonstop seizures began. Those lasted for six weeks, with some days finding her having up to 30 seizures. Sadie did not respond to any medications during that time, and later was diagnosed with epilepsy.

“Up until then, she was a typical toddler doing things toddlers do,” Sarah said. “Now, she’s taken about 10 steps back.”

Before that day, Sadie was talking, walking while holding on to furniture, self-feeding and more at 13 months old. Those six weeks changed all of that.

“It’s scary. It’s very scary,” Sarah said. “It’s so hard to watch your child go through that and when the doctors are saying, ‘We’ve done all that we can do.’

“Then you’re pretty much at the end of your rope. All you can do is turn to God.”

After spending months in and out of Kosair and The Cleveland Clinic, Sadie came home to her family, where her mom saw the final toll the seizures had on Sadie’s development. Sadie could no longer do many of the tasks she had once done and it was time to start the teaching process all over again.

“It’s hard, because it’s not like she was born this way and we have dealt with it all along,” Sarah said. “She was just fine, until then.”

With ongoing therapy through First Steps, Sadie has regained some of her skills, such as self-feeding, but she will only use her right hand, since the left side of her body suffered the most from the seizures.

She also is starting to walk while holding on to furniture again. However, many of her motor skills have not caught up to where she left off. Sadie also has not talked since September.

Sarah — a teacher at Bridgepoint Elementary School in Jeffersonville — has taken a break from teaching to be home with Sadie.

“I do miss teaching and being in the daily grind, but I have to make this sacrifice for her for now,” she said.

Her co-workers there organized a benefit for Sadie in November and even put Sarah in touch with other mothers who have gone through similar situations with children.

One of the moms had a child in first grade, the other had one in seventh. Both are now doing well in their classes and everyday lives.

“It just gave me hope that she will be able to go on and live a normal life,” Sarah said.

For now, Sadie will have to continue her therapy to catch up to where other children her age are developmentally. So, family and friends have organized another benefit set for Feb. 2 in New Albany to help with the bills that keep adding up.

“It’s also in a way a celebration for Sadie’s life and for her not seizing anymore and for her getting her skills back,” Sarah said.

Sarah said she’s amazed at how much the community has come together to help her daughter and her family get through this tough time.

“Boy Sadie, are you going to have a tale to tell.” Sarah told her daughter. “We’re keeping a scrapbook for her, so she’ll know what everybody did for her.”

But what little Sadie did for her family, Sarah says, is so much more than she could know.
“She’s an angel. She’s mommy’s little angel,” Sarah said as she rubbed her nose to Sadie’s. “She’s taught us a lot of life lessons. She’s taught us what’s really important in life and that’s God and family.”

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