Hoping for a miracle
'The last thing she said to me was, 'I love you, Momma.' It was very frustrating. It just hurt terribly knowing I'm never going to hear her voice again.' -- Krista Johnson
What is there without hope?
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Todd and Krista (Copa) Johnson pray for a miracle -- a cure for metachromatic leukodystrophy, a disease that afflicts Krista's 7-year-old daughter Kylee Jo.
As part of their quest for a cure, the Johnsons are supporting Hunter's Day of Hope for Children on Feb. 14, which includes the sale of Hunter's Hope candles. The $5 donation for a candle goes toward Hunter's Hope to support research efforts of leukodystrophies.
Hunter's Hope is named for Hunter Kelly, son of former Buffalo Bills Quarterback Jim Kelly. Hunter, who will celebrate his 3rd birthday on Valentine's Day, suffers from Krabbe disease, one of nine leukodystrophies.
Krista Johnson said that Kylee Jo has changed her life immensely. "I wouldn't be who I am today without Kylee," she said. (Dispatch Photo by Clint Wood)
About Kylee
Kylee Jo was born a healthy baby girl on Feb. 10, 1992.
"She did all the normal things that children do," Krista said of her daughter.
Within two years, Kylee was showing signs of declining health. She began limping and later dislocated her hip. At first, her physicians diagnosed her with cerebral palsy, a common misdiagnosis for leukodystrophy patients.
Not until Jan. 6, 1994, was the answer revealed explaining Kylee's deteriorating health. Physicians at the University of Minnesota diagnosed Kylee with metachromatic leukodystrophy, a terminal disease. Leukodystrophies are inherited, progressive, nonselective disorders that affect the brain, spinal cord and peripheral nerves.
Krista said she didn't fully grasp the diagnosis at first. "The doctor said she is going to die," she said. "It was hard. I was very angry."
Coping with the diagnosis
Within weeks, Kylee's condition declined to the point that she required nourishment Hunter's Day of Hope for Children is Feb. 14, which marks the 3rd birthday of Hunter Kelly, son of former Buffalo Bills Quarterback Jim Kelly.
Hunter's Hope candles are available from Todd and Krista (Copa) Johnson. To purchase a candle with a $5 donation, contact the Johnsons at 828-2873.
Todd, who plays drums with the popular regional band Silent Partner, will have candles available at performances as well.
In addition, candles are available at the Floor to Ceiling store in Baxter, where Krista's father is employed.
through a feeding tube.
She has never talked since the feeding tube was put in place. "The last thing she said to me was, 'I love you, Momma,'" Krista said. "It was very frustrating. It just hurt terribly knowing I'm never going to hear her voice again."
Today, Kylee cannot walk or talk. She has lost her vision. She is fed daily through a feeding tube. She uses oxygen to assist her breathing. From time to time, she also suffers seizures.
During weekdays while Krista and Todd are at work, Helen Danielson, a Good Neighbor home health aide, cares for Kylee.
Todd said Kylee can express emotions. He said she can identify people through touch, such as rubbing noses.
He said it's easy to feel helpless.
Krista agrees. She said at first it also was easy to feel sorry for yourself. One day, Krista said she looked at Kylee and thought, "Why feel sorry for me?"
She said she has grown up a lot and has accepted Kylee's disease through the support of family, friends and especially Todd coming into her life. In addition, she said their employers -- Krista is employed at McLeod USA and Todd works at Universal Pensions Inc. -- have been incredibly supportive in giving them time off from work when necessary.
Krista said she tries to stay as strong as possible. Often, her friends comment on her strength. But she said they don't see her at night in tears suctioning Kylee's throat when she has difficulty swallowing. Krista said she tries her best. "I try to be very strong for Kylee," she said.
Krista said Kylee has changed her life immensely.
"I wouldn't be who I am today without Kylee," she said. "Life is just so much more precious."
Todd, Kylee's stepfather, agrees. He said he knew he wanted to marry Krista from their first date. "She has to be some kind of woman to be the mother that she is," Todd said. "There is no one else I want to be the mother of my children."
The Johnsons do have another daughter, Jayda, who is nearly 2. Although she has not been tested for leukodystrophies, Jayda is the picture of good health.
Todd said marrying Krista and becoming a parent to Kylee has opened his eyes. "It's one of the greatest things that has ever happened to me," he said. "That's how I look at it."
In search of public
understanding
In addition to fighting for a cure, Krista said public awareness of leukodystrophies is one of her primary goals in speaking out about her daughter's disease.
She encourages people to ask questions, not to jump to conclusions or gawk. "She's beautiful," Krista said. "If you have a question, just ask."
Todd also supports public awareness. "That way the public can learn, too," he said. "Kylee's special."
Shocked by stares from strangers, Krista recalls leaving a cart full of food in a grocery store once rather than endure the awkward glares.
"She's not contagious," Krista said. "Who's to say she's not normal. You don't have to be afraid of her. She's our angel."