Corynna Strawser has the same dreams as any teenage girl — maybe more.
She dreamed of becoming a dancer in New York City.
She dreamed of graduating from high school and doing a grand tour of India.
She dreamed of becoming a world-famous makeup artist and transforming faces with the power of her artistry.
But now, in what may be the final weeks of her life, all her many dreams have evolved into one big dream: finding a cure for the Mitochondrial Disease that has slowly been robbing her of life. It’s an incurable genetic disorder that makes cells unable to produce energy for the body’s organs.
“Mitochondrial Disease kills a lot of kids, but nobody knows about it, and I have a huge problem with that,” she said. “There’s so little funding. There is so little testing and so little treatment, and it needs it so bad.”
The Corynna Strawser Research Fund, which raises money for The United Mitochondrial Disease Foundation, is an important part of her legacy. “My disease is a genetic mutation, and God put this in my DNA from Day 1,” Corynna reflected. “God knew this when I was born, that my life would turn out this way. I thought that my life would turn out a different way, that I would dance in New York City. But this was my life.”
Her mother, Kristi Strawser, knows her daughter’s life has already inspired others. “The research fund was set up now so that she can see her legacy in action,” she said. “Usually they wait until somebody’s gone to set up a fund.”
Kristi is a hospice nurse who has taken a leave from work to care for her own terminally ill daughter. “Corynna wants to create awareness so someone else doesn’t have to endure what she has endured,” she said.
A ‘miracle baby’
You might expect Corynna’s Greenville home to be a sad place, but it is a cheerful and lively. Corynna has dyed her hair a pale lavender, and her bedroom is a teenage girl’s dream, decorated with vintage chic and the Indian prints she loves so much. Her dresser is packed not with clothes but with makeup — Corynna’s new passion after she no longer had the strength to dance. She loves the transformation in people’s faces after she does their makeup. “I love seeing them look in the mirror,” she said.
They have their bad days, Kristi admits, but “we don’t want to have regrets, wishing we hadn’t cried the whole time or wasted too much time thinking about her dying. “When we thought she had something that could be cured, we put our lives on hold. Now we say, ‘Let’s live.’”
A spirit of thankfulness pervades the household. “We are so very thankful for Corynna for so many reasons — her intelligence, her quick sense of humor, her confidence,” Kristi said. “Even though we won’t get the years we thought we would, the past 16 years we will forever cherish. She has brought so much love and completed our family. She never complains even when she has a right and deserves to.”
Kristi had delivered two stillborn children when Corynna, her “miracle baby,” was born. She was an active, healthy child with a passion for dancing, spending several hours every day in the studio.
Then her health mysteriously started to decline. Corynna was forced to stop dancing because of a racing heart that caused her to pass out. She also became malnourished because she could barely eat. She had a bowel resection surgery, hoping that would help, but she continued to grow weaker, losing her ability to eat altogether. Eventually she could no longer walk.
‘Our time together is a priority’
Then, a year ago, she was at last diagnosed with Mitochondrial Disease, which affects about one in 4,000 children in the U.S. It is incurable.
Instead of lamenting the time that they won’t have with their daughter, Kristi and her husband, Sean, are cherishing the time they have left.
Some days, Kristi doesn’t have time to take a shower, but she doesn’t care. “If I have a choice between showering and lying down with her, I’m going to spend the time with her. She doesn’t care what I look like. Our time together is our priority.”
Kristi’s only regret, she said, is that “I wish I could grab some seconds back from those days when I was too busy to enjoy her. I thought I had my whole life to do that. We think we have a whole lifetime of making memories.”
These days, even when she is so sick, Corynna is thinking about her legacy, and hoping to make a difference. Last week, she enjoyed a visit from the Darke County Commissioners, who presented her with a proclamation declaring Nov. 25 “Mitochondrial Disease Awareness Day.”
Clutching her proclamation, Corynna brushed away tears and said, “This means more to me than you can ever imagine.”
Marveled Commissioner Mike Stegall, “She has a fatal disease, and she wants to make people aware of it. If that isn’t bravery, I don’t know what is.”
Kristi thanked the commissioners, beaming. “You just made her day,” she said. “We are lucky to have such a caring community that has rallied around Corynna.”
Larry Kinneer, with the State of the Heart Hospice, said Corynna is an inspiration for so many people that “she has captured the hearts of this community.”
Final video awaits family
Corynna is tired of going to the hospital, but she takes comfort from her mother’s background as a former nurse for Greenville’s State of the Heart Hospice, which is providing her end-of-life care. “I grew up hearing her talk about dying and saying, ‘It’s not as terrible as people think,’” she said. “I can ask questions about the dying process, and she answers them honestly.”
With the help of the State of the Heart Hospice staff, Corynna spent two months preparing an hour-long life review video, taped over the course of 10 sessions because she tires so easily and struggles to breathe. Her family and friends will watch it only after she is gone.
“I did the video to make sure they know how they impacted me,” Corynna explained. “There are things you forget to say. They can look back, and it will always be there. I wanted to thank my parents and family and so many people who were important in my life and who did things that meant so much to me. Those people have had an impact on my life and they were a part of making me who I am today.”
Hospice social worker Pam Pohlman, who worked closely with Corynna in making the video, said the process “helps patients to find value and meaning in their lives after reviewing their accomplishments.”
Most patients are far older, Pohlman said, but “Corynna is so insightful and courageous, and wise beyond her years. The blessing has been mine and privilege to learn from her.”
Kristi said that her daughter has taught her the true meaning of faith.
“She is wise beyond her years and teaches even adults what it means to have faith,” she said. “I am jealous of all she is so sure of and all she knows. I will forever aspire to be a better person because of her.”
How to help
What: The Corynna Strawser Research Fund, which raises money for The United Mitochondrial Disease Foundation.
To donate: Go to www.umdf.org/corynnastrawser