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Family of 5-year-old College Station girl with epilepsy praying for answers

Family of 5-year-old College Station girl with epilepsy praying for answers

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When Jolie Kate Boyd’s family set up a lemonade stand in 2019 as a way for the 5-year-old to practice social skills while contributing the proceeds to children with disabilities, they did not anticipate the money would go toward Jolie’s own medical needs.

Jolie has epilepsy and has had seizures since she was 15 months old, said her mom, Jennifer Boyd.

Since then her seizures have become uncontrollable, worsening about the time the coronavirus pandemic hit the Brazos Valley, Boyd said. Jolie is on four medications, she said, and each one alters her personality.

“It’s like we haven’t known our child. We know her, but we don’t know our true child, who she would be without the medicine,” she said. “She’s been on medication since she was 18 months old.”

Boyd and her daughter spent the last half of October at Children’s Memorial Hermann Hospital in Houston to try to locate the part of Jolie’s brain that is causing her seizures.

The process involved placing about a dozen electrodes on the surface of Jolie’s brain to detect seizure activity in an effort to determine if Jolie is a surgical candidate to attempt to fix or minimize the effects of her epilepsy.

Proceeds from the second annual Cups for a Cause lemonade stand in October paid for the down payment for the surgery and for an epilepsy alert dog for Jolie.

Most people, Boyd said, think seizures are someone convulsing on the floor, but that is not always the case. Jolie also has had drop seizures in which her head drops or she collapses.

“We ordered cameras — numerous cameras — for every room in the house, the front yard and the backyard, just because of the increase and the severity of them,” Boyd said. The kindergartner wears a helmet to school at Forest Ridge Elementary in College Station where she splits her time in the life skills program and general education classes.

Due to nighttime seizures, Boyd said, she sleeps next to Jolie with her hand on her daughter’s back and each morning scans the footage from the cameras for evidence of seizures.

“When you do see your child having a seizure next to you while you’re asleep, and you don’t know it, it’s heartbreaking,” Boyd said. With a service dog, “she can be back in her bed and the dog can come tell us that she needs us, based off of a scent, and then it would go back to her and comfort her. It’d be life-changing. We wouldn’t have to feel like we have to keep our eye on her every second of every day.”

Belle, a nearly 1-year-old Labradoodle, has been training to identify Jolie’s scent during a seizure, which is different from her baseline scent, Boyd said.

“If a dog can alert them a little sooner so they have an idea of what’s going on, they can take care of it sooner,” said Nancy Cadle, co-owner of River’s Edge Dog Academy in College Station, where Belle has been in training. 

Belle began her training when she was about 8 weeks old and has cross-trained for Type 1 diabetes and epilepsy alerts.

Boyd and her husband, Nik, will undergo training themselves before taking Belle home. Boyd and her husband’s training is expected to begin after their hospital stay.

A dog will be a relief for the family, especially as Jolie gets older and responds to the alerts on her own, Boyd said.

“It’s just an amazing thing,” she said. “We never thought it would be a reality for us, but the lemonade stand and some very generous donations from our friends’ church and our church, it’s happening.

Jolie’s lemonade stand was given the Entrepreneur of the Year and Best Advertising Campaign awards for this year’s Lemonade Day contest. One of the biggest prizes, Boyd said, is the awareness the family has been able to spread about epilepsy, especially during November, which is Epilepsy Awareness Month.

“Epilepsy is very under-recognized, and there’s a huge stigma about it,” she said. 

Jolie’s surgery to place the electrodes went well, Boyd said, and they are waiting to get more information to more accurately pinpoint the hot spot.

“Jolie is so brave and tolerant of being confined to this hospital room, tethered by a ponytail of cables coming from her head,” Boyd wrote in an email update last week. She plays with her toys and does arts and crafts to distract her from where she is and the activity surrounding her. For Halloween, she dressed as a witch and went trick-or-treating in the hospital.

Boyd said she and her family will continue searching for how they can help Jolie and will keep educating others along the way.

“We’re playing a waiting game. We pray a lot. We wait for answers. We pray the answers are coming, and it gives us hope,” she said.

Boyd has set up a Facebook group called Jolie Kate’s Journey to provide updates on Jolie.

Morning Star Cowboy Church in Kenney will hold a garage sale to benefit Jolie and the Boyd family on Saturday from 9 a.m. to 4 p.m. A GoFundMe page has been set up to help with medical bills at www.gofundme.com/f/jolie-kates-journey.

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