- The Washington Times - Wednesday, September 3, 2014

Melissa Sarkis-Kirby is trapped inside her own body.

After she suffered a brain stem stroke in April, the once healthy and active mother of two has had to learn to communicate through eye blinks and head nods, the result of rehabilitation that’s become increasingly difficult to pay for after her insurance stopped its coverage.

Communication is painstakingly slow and tiring, her sister Stephanie Sarkis-Hickey says, and yet all Ms. Sarkis-Kirby wants to talk about is how her friends and family are coping and whether her children had a good first day of school.

“She’s the sweetest person in the whole world. She’ll sit there and make small talk and ask what do you need,” Ms. Sarkis-Hickey says. “She asked the other day if we were all going to be able to make it through her recovery.”

Ms. Sarkis-Kirby has been recovering for four months after her stroke, and the question now isn’t whether she can or wants to recover, but whether there’s enough financial support to let her do it.

“The problem is our insurance … stopped paying for [Melissa],” Ms. Sarkis-Hickey says. “It happened in mid-June. They said you only get 60 days of therapy. We had lawyers look at it, sent appeals, nothing came of it. We’re on our own.”

On Sunday, Ms. Sarkis-Kirby’s family and friends are hosting a “Radiate! Love + Light for Melissa DC” fundraiser to help focus attention on her and continue her recovery.

Ms. Sarkis-Hickey says it costs about $1,000 a day for Ms. Sarkis-Kirby to stay in a Maryland rehabilitation facility, where she has been since early June.

The Sarkis family, along with Ms. Sarkis-Kirby’s 9-year-old daughter, Colette; 7-year-old son, Kingston; and husband Matt are looking forward, but when Ms. Sarkis-Kirby first suffered the stroke, just surviving was on everyone’s minds.

On April 8, Ms. Sarkis-Kirby collapsed while running on a trail near where her daughter was practicing lacrosse.

The brain stem stroke triggered eight “mini-strokes” that caused her body to convulse, Ms. Sarkis-Hickey says.

“This is the part that’s most upsetting,” she says. “She’s 42 years old, completely healthy, not a pound overweight. She’s all muscle. And this happened to her.”

Dr. Kathleen Burger, assistant professor of neurology and director of cerebrovascular neurology at George Washington University, says “in general, young people are not immune to strokes.”

When a person has a stroke at their brain stem, where many brain fibers are located in a small space, even a small stroke can make a significant impact.

“Any stroke … can have a huge variety of outcomes,” Dr. Burger says, adding that brain stem strokes tend to affect motor skills and speech, rather than cognitive functions.

The first four days after her stroke, Ms. Sarkis-Kirby was in a coma, and doctors told her family she likely wouldn’t even be able to open her eyes.

“After four days, she opened her eye,” Ms. Sarkis-Hickey says. “She was in intensive care for three weeks. She could only look up and look down, and she had an ever so slight movement in her right toe.”

Therapists were brought in daily to help keep Ms. Sarkis-Kirby’s body from atrophying. They would sit her up in bed, try to get her into an upright position using a body sling, and even hooked up a bicycle machine to her bed for her legs.

“All through this her cognitive ability was 100 percent there,” Ms. Sarkis-Hickey says. “It’s all her movement that’s affected.”

Over the following few weeks, Ms. Sarkis-Kirby was transferred from intensive care to a brain recovery unit at the Johns Hopkins Hospital to Kernan Hospital — now The University of Maryland Rehabilitation & Orthopaedic Institute — in Baltimore.

“While she was at Kernan, she was able to get off the tracheostomy [tube],” Ms. Sarkis-Hickey says. “That was one thing that was really awesome there, that she was able to release herself from that.”

Right around Memorial Day, Ms. Sarkis-Kirby was transferred to the Genesis HealthCare facility in Towson, where she continues today to get treatment.

“Now she receives electric stimulation at least five times a week, and she’s able to move her right arm,” Ms. Sarkis-Hickey says. “She’s able to grasp pretty well with her right hand, but she still has a lot of weakness in her hands. It wouldn’t be like a movement like you or I made, but she’s got a lot of movement in her right leg. It’s very, very strong, her right leg.”

Ms. Sarkis-Hickey credits her sister’s formerly active lifestyle to the physical progress she has made, and right now her family is working with her as she learns to communicate via a device hooked up to an iPad.

“She is fighting to speak one day,” Ms. Sarkis-Hickey says. “She will talk again, she must.”

The “Radiate!” event is scheduled from 5:30 p.m. to 8:30 p.m. Sunday at Redwood Restaurant and Bar in Bethesda. Tickets are a minimum of $50. Guests can bid on silent auction items, and 100 percent of the ticket sales and auction proceeds will go toward Ms. Sarkis-Kirby’s rehabilitation.

For more about Melissa Sarkis-Kirby visit LoveAndLightForMelissaDC.BrownPaperTickets.com.

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