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Local girl not giving up fight against rare stroke-causing condition

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By Mallory Bilger

It takes 10-year-old Rose “Rosie” Russell a little while to warm up to strangers, and understandably so. She has dealt with a myriad of doctors, nurses, specialists, nurses aids and other medical staff coming in and out of her life for more than six years.

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Like many other children with severe illnesses, she has become accustomed to the needle pricks, surgeries and being disturbed in the middle of the night. Kosair Children’s Hospital in downtown Louisville has become her second home.
But Rose is a fighter. She’s a dancer and a singer. She likes to dress up and wear dangly earrings. When you start talking about her favorite music stars — Taylor Swift and Katy Perry — her eyes light up even on the toughest of days.
Though her illness often steals her energy and her physical abilities, it doesn’t steal her spirit. That is what her parents, David and Kathy Russell of Waterford, say keeps her going.
Rose was diagnosed with a rare, complicated and seemingly incurable disorder known as MELAS, or Mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes, when she was 6 years old and attending Spencer County Elementary School. She began suffering from its symptoms when she was 4 and it took doctors more than two years to reach a diagnosis.
According to a statement Kathy provided to The Spencer Magnet outlining Rose’s medical history, the illness began with unexplained vomiting, dehydration and partial body seizures.
“She continued on with her life, even played ball herself, but she had to drink. Everyone at SCES would make sure she would drink all day long,” Kathy wrote.
But it quickly became apparent that Rose’s issues were severe. At 6 years old, she started suffering from migraine headaches and had her first stroke. It would be the first of 10 strokes she has experienced thus far. Rose suffers from deteriorated vision, digestive trouble, muscle weakness and the ever-present threat of strokes.
She is currently recovering from having six inches of her small intestine removed and often receives her nutrition through an IV. Her current hospital stay has lasted almost six months. She was admitted to Kosair on June 1 with digestive complications and has not been stable enough to return home since. At one point, she spent five weeks at Cincinnati Children’s Hospital for testing and procedures that weren’t available locally.
It’s a continuing battle to determine Rose’s correct care path, but her parents refuse to give up. David took an extended leave of absence from his job at Ford and stays with Rose six days a week. Kathy — who also suffers from a less severe form of MELAS and diabetes — travels daily to see her daughter. Rose’s sister, 18-year-old Brittany Russell, assists around the house and introduced Rose to her favorite singers. David said it is difficult spending so much time at the hospital, but feels he must be an advocate for his daughter.
“It’s usually day by day,” he said of Rose’s condition. “One day she’s happy, the next day she is grumpy.”
But 2013 has been the toughest year yet for Rose.
“It kind of escalated this year,” David said.
Kathy said her daughter listens to her favorite music when she becomes upset or scared, and even got to meet country music superstar Taylor Swift in May courtesy of Dream Factory Inc. Dream Factory is a non-profit organization that works to make ill children’s dreams come true. Rose was able to meet Swift at the YUM! Center, where she sat in the eighth row and enjoyed the concert with her parents.
“Rose sang and danced all night,” Kathy wrote. “She had the biggest grin on her face. It went from ear to ear. It just brought tears to a mother to see her daughter so happy.”
Several of Rose’s SCES teachers visit and send her cards regularly. David said he is unsure if or when his daughter will be able to continue school, but he hopes maybe one day she can. He said doctors at the Cincinnati Children’s Hospital said with the right treatment, Rose could live into her 20s or maybe even to 30. But her medical care is expensive.
“It’s a little hard,” David said, struggling to find the right words. He said he often wants to ask for help, but sometimes doesn’t know where to begin.
But some in the community are already asking for him. SCES Special Education Teacher Julie Wise doesn’t want her former student’s story to be forgotten, especially in her own community. Wise has fond memories of Rose and shared some of those thoughts with The Spencer Magnet.
“I don’t know that people are in the loop,” Wise said of Rose’s condition. “If you worked with her at all, you just absolutely adored her.”
Wise hopes the Spencer County community can rally around the Russell family and offer support during this difficult time.
“I’ve never heard her say anything about her situation at all. She didn’t take anything for granted. Every day was a new day,” Wise said of Rose.
A trust fund to assist the Russell family with medical expenses has been established at Fifth Third Bank in Rose’s name. Anyone wishing to donate to that fund can do so at any Fifth Third location. The account number is 1914.
David said each day in Rose’s delicate life brings its own triumphs and uncertainties, but he is hoping his daughter might be able to make it home for Christmas. It’s no certainty, but Rose’s spirit keeps her parents encouraged.
“She’s a tough little girl,” Kathy said. “She fights.”