Dying teen’s video inspires family to carry on, pay it forward


HOW TO HELP

Corynna's Wish: Send a donation addressed to State of the Heart Hospice, 1350 N. Broadway, Greenville, OH 45331 with a designation for Corynna's Wish.

Corynna Strawser Research Fund: To learn more or make a donation, visit http://www.umdf.org/corynnastrawser

What if you had a single hour to sum up the whole of your life?

Just one short hour to tell the tale of the people you loved, the adventures you had, the way you changed the world.

It sounds daunting, even if your life turned out to be a very short one.

Dying at 16, Corynna Strawser knew that a life review video would comfort and inspire her loved ones for long after she was gone.

“I want something to leave behind for my loved ones,” she explained at the beginning of the video. “I feel thankful and blessed to have them in my life. When I am gone, they can have part of me with them.”

Corynna and family friend Pam Pohlman lovingly prepared the life review video over the course of four months. It was not to be seen until after her death.

Corynna died Dec. 11, 2013, slipping away after saying a private farewell to close family and friends.

At one point, she called out to her mother, Kristi, “I can’t go, because I hear you crying,” she told her mother.

“Then I won’t cry,” Kristi vowed.

It was a tall order, as she watched her only child pulled between this world and the next. “It was a tug of war at the end between wanting to see God and wanting to stay here with us,” Kristi said.

I met the Greenville teen last year for a Thanksgiving Day story about her courageous battle with mitochondrial disease, an incurable genetic disorder that makes cells unable to produce energy for the body’s organs.

A year later it was an honor – and a joy – to watch Corynna’s hourlong life review video with her parents, Kristi and Sean Strawser of Greenville.

I expected the video to be inexpressibly sad, but instead I found myself smiling, even laughing, at Corynna’s wit, candor, and unconventional thinking. She was the same delightful girl I met a year earlier, her personality waving before you like a sunflower despite her frail frame and struggles to breathe. Her hair was dyed a pale lavender and her room was decorated with vintage chic and the Indian prints that revealed her love of adventure.

When Pohlman asked Corynna to describe herself, she replied, “Sassiness, cleverness, witty. What you see is what you get.”

When asked about her accomplishments, Corynna said, “I am proud I inspired so many people in so many different ways, and that hearing my story helped them with their own struggles.”

Corynna hadn’t been able to attend school in three years, she said, but “school has been one of my biggest supporters. I doubt if you could find a kid in my high school who hasn’t done something to help me or been inspired by me.”

When she could no longer attend Greenville Missionary Church, her youth group brought the meeting to her house. “In my situation most people would be mad at God, but I feel just the opposite,” Corynna said. “When you get sick, whom do you turn to? You turn to God.”

Until the age of 13, Corynna lived an active, healthy life, spending several hours a day in the dance studio. Even when she became afflicted with a series of mysterious ailments, she would race to the dance studio as soon as she was released from the hospital.

“I danced until I couldn’t dance at all,” she said.

And even beyond that. At a Greenville High School pep rally, her friends surprised her by bringing her onstage for a Janet Jackson dance medley. “They wheeled me in, and I danced right there in my wheelchair,” Corynna said. “I was in tears, I was so happy. There was not a dry eye in the room. If people saw what teenagers do in this town, they wouldn’t get so down on teenagers.”

From Corynna’s perspective, God didn’t take her life away: “I may have thought that was my life, but it was not. My life was supposed to be this way. God had a plan. I went from dancer to makeup artist, and it is a passion not something I am settling for. The sicker I got, the closer I got to God.”

It was the same with her family.

“My family is so full of laughter, so close and loving,” she said. “At home it is carefree, no stress.”

In the life review video, Corynna talks about her beloved Beagle, Cinnamon: “He’s my baby. He tries to protect me. He sleeps with me and takes up most of the bed, but he’s too cute to move.”

She talks about her boyfriend, Tyler: “I’m sorry our infinity was so small, but I love him.”

She talks about her lost hopes for the future. She wanted to be a dancer in New York City, or a makeup artist in London. “I wanted to adopt a teacup pig named Charlotte,” she said.

She confesses to being a “Daddy’s girl,” describing all the ways her long-suffering Dad would spoil her. On her Special Wish Foundation trip to a makeup convention in Manhattan, her father “carried my makeup bag all over town and listened patiently while I showed him everything I had bought.”

Corynna says she and her mother faced the journey together 24/7: “Me and my mom are a team. She kept me positive, and helped me to understand medical things. We are twinsies; we say the same thing at the same time.

“She is like a friend,” Corynna said, then added with a giggle, “even though no 16-year-old wants to say that about her mom.”

As she taped the life review video, Pohlman said, “I was struck by her insight about what was going to be ahead, and her desire for her family after she was gone. She knew how hard it was going to be, being their only child, and she was doing what she could do to prepare them, and to assure them because of her strong faith she knew where she was going to be.”

Pohlman marveled at the end result, at the rich, full life the video unveiled despite the short span of years: “She inspired me to live my life the same way. She showed relentless hope and faith and strength to live her life as fully as she could right up to the end.”

Christmas came early for the Strawser family last year, who opened gifts Nov. 30. That same day, the Greenville community organized a horse parade in Corynna’s honor, with carolers and horse-drawn carriages coming straight to the sick girl’s window.

“It couldn’t have been better,” Corynna proclaimed after what everyone knew would be her last Christmas.

After that, Kristi recalled, “I got panicky because I sensed that we were losing her. She was having seven or eight seizures a day. I felt like she had been hanging on for Christmas.”

In the final weeks of her life, Corynna was thinking less about herself than about others — the 4,000 other children in the United States with the same diagnosis. “Mitochondrial disease kills a lot of kids, but nobody knows about it, and I have a huge problem with that,” she told me. “There’s so little funding. There is so little testing and so little treatment, and it needs it so bad.”

Her advocacy led to the birth of the Corynna Strawser Research Fund, which has raised more than $28,000 to date for the United Mitochondrial Disease Foundation.

At the end of her life review video, Corynna asked her parents to do two things for her.

“Think of me every day, but don’t cry every day,” she said. “Think of me with joy, not sadness.”

And she had another final request: “Help people the way they have helped me. That allowed us to be closer as a family.”

Since her death, the State of the Heart Hospice in Greenville has established a fund called Corynna’s Wish, granting “bucket list” requests to chronically ill patients such as a young man with ALS who wanted to take his fiancée to see the ocean. “Corynna was a big believer in paying it forward,” explained hospice spokesman Larry Kinneer. “She wanted others to learn and to benefit from what she was going through.”

Her parents have tried to fulfill her wishes. “Maybe I cry every day,” Kristi confessed, “but she prepared us emotionally by making the video. We are better people after this. We could stay in our beds feeling miserable or we can go out and do something positive. It’s a choice we make every day, to find our reason to be here, just like Corynna did.”

On April 28, Corynna’s birthday, they organized a team to cook dinner for the Ronald McDonald Houses in Dayton and Cincinnati. They have organized an annual “Shine On Corynna” 5K to raise funds for the Corynna Strawser Research Fund. They are establishing a scholarship fund in Corynna’s name at Greenville High School.

“I feel a lot of sadness,” Kristi said, “but we’re not angry people. She left us with such a spirit.”

She danced until she couldn’t dance at all.

And I have a feeling she is dancing still.

Contact this columnist at maryjomccarty@gmail.com.

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