Epilepsy has taken many things from Mary Beth Thistle. The love of her family is not one of them.

Danette Dooley
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Together for life

Thirteen-year-old Mary Beth Thistle loves bubbles, "Barney," "Blue's Clues," and "Bear in the Big Blue House." Her friends call her Biffy.

"When she was born, her brother Benjamin was two years old and he called her Mary Biffy. So the Biffy stuck," says Mary Beth's mother, Patti Thistle.

Patti Thistle holds her daughter, Mary Beth. - Photo by Joe Gibbons/The Telegram

Thirteen-year-old Mary Beth Thistle loves bubbles, "Barney," "Blue's Clues," and "Bear in the Big Blue House." Her friends call her Biffy.

"When she was born, her brother Benjamin was two years old and he called her Mary Biffy. So the Biffy stuck," says Mary Beth's mother, Patti Thistle.

Mary Beth sits on the living room floor in front of her mother.

It's difficult to say if she understands any of the conversation about her health.

"I always thought Mary Beth was at about the level of a four-year-old. But when Christopher came along, when he was about 18 months, they were playing really well together. And by the time he was 24 months, he'd begun to pass her, socially," Patti says of Mary Beth's younger brother, who is now three.

Diagnosed with Dravet syndrome (also known as severe myoclonic epilepsy of infancy), Mary Beth began having seizures at the age of 5 1/2 months.

"She had a half-hour grand mal on the left side of her body. Within weeks, she had another one involving the other side of her body. Since then, she has been in epileptic status more times than I can count," her mother says. "She has died in my arms four times."

On one occasion, Patti says, Mary Beth's lungs stopped working for more than four minutes.

"We couldn't get any air into her. Her lungs did not relax until she died and we brought her back to life. She lost many skills that day. At age four she really regressed mentally."

Patti describes her daughter's seizures as "catastrophic epilepsy."

Over the years, Mary Beth has had at least 13 different kinds of seizure, her mother says.

For the past seven years, they've been sharing the same bed. Patti needs to be there for Mary Beth when the seizures strike.

"Normal seizures don't hurt you unless you fall down or bite your tongue, but catastrophic seizures steal skills from you," she explained. "And Mary Beth's seizures stole everything from her.

"All she could remember (at age five) was her brother Benjamin. She forgot blankie. She forgot how to walk and talk and eat. She even forgot me. She didn't have a clue who I was."

Mary Beth is a challenging needs student at Macdonald Drive Junior High School in St. John's. She has a student assistant with her at all times as well as one-on-one after-school care.

Her typical week includes about three grand mal seizures every second night.

Patti says Epilepsy Newfoundland and Labrador has been extremely helpful in providing her with information, particularly when Mary Beth was first diagnosed.

"Gail was my rock," Patti says of Epilepsy Newfoundland and Labrador founder and executive director Gail Dempsey.

"She gave me the confidence I needed to go ask the questions I needed to ask."

Mary Beth may be unable to make an X or an O, or to put together simple jigsaw puzzles, but she still has the ability to warm hearts.

"When she smiles at you, your world lights up," Patti says, watching as her daughter picks up puzzle pieces and drops them on the hardwood floor.

Mary Beth loves conversation, but often repeats the same phrase.

"It's all she can think of to say," her mom said.

Patti says several words, encouraging her daughter to repeat them.

After several moments, Mary Beth glances up. Rather than repeat one of the words her mother has said, she finds her own.

"Mommy," she says slowly, smiling at Patti before returning to her puzzle pieces.

Patti reaches out to stroke her daughter's cheek.

"What else do you love, Biffy?" Patti asks, then goes on to answer for her daughter.

"Oh, she loves phoning people. And she loves visiting and picking things up and passing them to you. And she can pick out the Pepsi and Mary Brown's logos. And sometimes she can pick out M.B.T. for her initials."

"Grammy," Mary Beth says, as her mother explains that her grandmother is one of the people Mary Beth loves phoning.

Patti is excited that her daughter has spoken.

"P-I-Z-Z-A," Patti sings, spelling out the letters.

She is rewarded with another big smile and the word "pizza" from her daughter.

"Yes, pizza, that's right," Patti said, smiling at the victory.

Mary Beth requires full-time, around-the clock care, but Patti says the entire family has learned many valuable lessons from her.

"People are always telling me what a fine young man Benjamin is," she said.

"He's 15 years old and very respectful of people, their feelings and needs. ... Christopher, the three-year-old, is much better at sharing than he ever would have been if he didn't have to share everybody's time and energy with Mary Beth. He is well on the way to being as empathetic and helpful as Benjamin."

Patti has learned her own lessons from her daughter.

"You never know what you can do until you have to do it," she said.

While she admits it's impossible not to worry about what the future holds for Mary Beth, one thing is certain.

"We're together for life," she said.

danette@nl.rogers.com




Purple Day

March 26
Epilepsy Newfoundland and Labrador will mark March 26 as Purple Day for Epilepsy.
Many preschools throughout the province will participate in the Purple Day Bunny Hop for Epilepsy, and Epilepsy Newfoundland and Labrador will also hold a public information session at the Guv'nor Inn in St. John's. Guest speakers include neurologists Dr. Abayomi Ogunyemi and Dr. David Buckley. Those living outside the St. John's area can participate free of charge via teleconference.
For more information on events, or on epilepsy and seizures in general, visit website www.epilepsynl.com.

Organizations: Big Blue House, Epilepsy Newfoundland and Labrador, Macdonald Drive Junior High School Pepsi Guv'nor Inn

Geographic location: St. John's, Newfoundland and Labrador

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