Miss Molly
Posted: Sunday, April 25, 2010 9:18 am
Carrol Copeland • Times RecordMolly Ann McKim, 20, talks about the effects of Wilson disease on her body. The former Southside Dixie Belle is awaiting a liver transplant.
When I was her ... "
That's what Molly Ann McKim thinks when she looks at her senior picture hanging on the living room wall in her parents' Fort Smith home.
When she was her, she could eat.
When she was her, she could sing.
When she was her, she could close her mouth and didn't drool.
Although that beautiful picture of her smiling face was taken only two years ago, 20-year-old Molly has lived the past year with the pain, fear and questions of Wilson disease, a genetic disorder that prevents the body from getting rid of excess copper.
A former Dixie Belle at Southside High School, Molly had a bright smile that matched her magnetic personality. After her graduation in 2008, Molly noticed a few things that just weren't right. She was drooling slightly and had major mood changes. She started her freshman year at the University of Arkansas at Fayetteville and was very anxious.
"I thought I was ADD," Molly said during an interview at her parents' home. "I came home every weekend. I was just not happy."
That fall, she started choking on food and slurring her speech. She even had trouble washing her hair.
After being involved in a car accident in January 2009 - she slid on icy roads and hit a brick wall - doctors thought Molly had conversion reaction, a stress-related disorder in which the body can react in different ways. Molly's reacted with a loss of speech.
By mid-February of 2009, she was having major pain throughout her entire body, with toes and fingers curling, and tight muscles; she could still swallow, but she would choke terribly.
Family Support
She saw doctors at Arkansas Children's Hospital; in early April last year, Dr. Molly Gathright at the University of Arkansas for Medical Sciences in Little Rock noticed something on a brain MRI. An eye test revealed Kayser-Fleischer rings in the eyes, which are copper-colored rings around the iris.
The diagnosis of Wilson disease was confirmed. That's when Molly's life turned upside down, she said.
Dr. Tony De Mondesert, a local gastroenterologist and the father of a friend of Molly's, surgically inserted a feeding tube in her abdomen because of her inability to swallow without choking. Her liver showed signs of cirrhosis.
"Wilson disease is the accumulation of copper in my liver. It stayed in my liver until my liver couldn't take it anymore, then it went into my bloodstream and then went into my brain," Molly explains as her paternal grandparents, visiting from Arkadelphia, listen. The excess copper in the brain has resulted in neurological deficits similar to symptoms of palsy or Parkinson's disease, such as involuntary shaking, drooling, difficulty speaking and swallowing.
"I can't close my mouth now but I could then," Molly said, again pointing to her senior picture on the wall and clutching the rag she always carries to catch the uncontrollable drool.
She talks in a very broken English, unable to pronounce many consonants, and is difficult to understand at times.
When she was first diagnosed, Molly's paternal grandparents, Harold and Patsy McKim, drove from their rural home near Arkadelphia each week to stay and care for Molly, driving her to doctors' appointments and assisting her with medication and her feeding tube, as Molly's parents worked. Paul McKim, Molly's father, is an engineer at Rheem Manufacturing, and her mother, Lisa McKim, is a resource teacher at Woods Elementary School.
Molly left the room briefly and returned with a gallon jug of olive oil, three jars of baby food and a canned protein shake.
"That's how I live," Molly said, adding that she eats three meals a day with a serving of meat, vegetable and fruit from the baby food, fat from the olive oil and protein from the shake.
New Liver
After mixing some medications in the kitchen, Harold McKim brought a tube of a cloudy liquid and a cup of water to Molly. She moves some clips on the tube and inserts the tube into her "button," or access, and slowly drains the zinc mixture, which helps block the absorption of copper in the digestive tract. Her daily regimen also includes Syprine, a chelator drug that releases copper from the organs into the bloodstream, where it is then filtered out by the kidneys.
Then Molly fills the tube with the distilled water.
"Not tap water; regular water goes through copper pipes," Molly explained. "Now I have to wait an hour to eat."
Since the excess copper has basically destroyed her liver, Molly needs a liver transplant.
"Her liver is not going to last long," said Harold McKim, or "Papa," as she calls him.
"I have to have a liver transplant," said Molly, adding that April is Organ Donation Month.
She's been placed on the liver transplant list and has received five unsuccessful potential liver calls, two of which resulted in her being prepped for surgery before finding out the harvested donor liver was not a healthy, transplantable liver.
"The first one had cirrhosis and the second one was 100 percent fatty," Molly said, adding that the donors must have been an alcoholic and an overeater, respectively.
She said nothing can describe the devastating feeling that life is slipping from her.
"It's like they say, ‘Molly, we have your life here; come get it' and I didn't get it," she explained. "That's worse than heartbroken."
Molly's family has been very supportive in her struggle with Wilson disease. Because the disease is inherited, Molly's two sisters, 17-year-old Chelsea and 11-year-old Chloe, have both been tested and do not have Wilson disease, which can affect males and females equally.
Only about one in 30,000 people get Wilson disease, according to information from the Wilson Disease Association. In order to inherit Wilson disease, both parents must carry one abnormal gene that each parent passes on to the affected child. And only one in 100 individuals in the general population carries one abnormal copy of the Wilson disease gene.
"My wife or I one are carriers," said Harold McKim, adding that both of his sons were carriers of the abnormal gene. "What's strange is that brothers who were carriers married women who were carriers. That's highly random. It's very rare for one carrier to marry another one."
‘I'm Fighting'
Molly's cousin, Sydney McKim, was diagnosed with Wilson disease at the age of 6. She is now 12, but her diagnosis came before the copper accumulation had done much damage to her liver.
Lisa McKim, Molly's mother, said the family didn't have a sense of urgency to test the other grandchildren six years ago. During a junior high physical, Lisa McKim said she mentioned to doctors they might want to check for Wilson disease.
"Even if they had, Molly's liver enzymes then would have showed normal," said Lisa McKim. "They're off now, but not very much."
When Molly's symptoms began, Wilson disease never came to mind, as Sydney had not experienced similar symptoms since she was diagnosed while presymptomatic.
Despite her struggle and the questioning of "Why me?" Molly keeps a positive attitude and her sense of humor. She does things most teenagers do, like check her Facebook every few minutes, text her friends, watch movies that make her laugh and listen to music. She paints and makes tie-dye T-shirts. Instead of giving a high-five, she bends her fingers inward from an open hand and says "ahhh ... jellyfish." But she can't eat.
"That's what teenagers do. I can't do that," she said. "I can't go eat queso and chips. I can't sit down and eat dinner with my family."
She gleans inspiration and support through her family, friends and members of the "Keep Praying for Miss Molly!" Facebook page. Molly daily reads the comments of encouragement and prayers for her on the site.
Through speech and occupational therapy and her medications, Molly's condition has shown improvements.
She ate food for the first time in almost a year this week. "I did choke, but I got it down," Molly said of the chocolate peanut butter bar.
"We are so proud," said Patsy McKim, or "Mawmaw". "She has fought so hard and come so far."
But Molly's fight is not over.
She patiently - and often impatiently - waits for the liver that will save her life, but she isn't one to give up.
"I can't quit on them, on the people who love me," Molly said. "I'm fighting to get better.
"Anyone can give up. It's the easiest thing in the world to do, but to hold it together when everyone else would understand if you fell apart, that's true strength."
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