Coon Rapids Softball Player Fighting Rare Disease
COON RAPIDS, Minn. (WCCO) - In a University of Minnesota Masonic Children's Hospital exam room, "Team Abby" awaits news. A young family is patiently keeping score in a six-month-long battle for life.
"We look at how things are going with the MRI images," Dr. Danielle Brueck said.
Abby Rodin, 15, is in her toughest game ever. The talented Coon Rapids softball catcher was a rising star, a girl's fast pitch softball player who possessed a bullet arm and a mean bat.
Rodin was destined to play varsity fast pitch with the Coon Rapids Cardinals until a scary night, late last summer.
Suddenly and without warning, she wasn't the same.
"It looked like a stroke," her mother, Paula Marcil, said. "She presented to me like having stroke symptoms."
As it would turn out, she was--many of them. The strokes acted to constrict the blood flowing through the tiniest vessels in her brain.
Out of nowhere, this seemingly healthy teenage girl was struggling just to stand.
"It was two weeks from being starry-eyed to completely not being able to walk," Marcil said.
"Just to sit up in bed was an ordeal," her father, father, Chris Rodin said. "It was scary."
Doctors at Masonic Children's diagnosed Abby after examining the blood vessels inside her eyes. What they determined she had was an extremely rare disorder called Susac Syndrome.
It's an auto-immune disease in which a person's immune system begins attacking itself.
"I'd never heard of it," Paula Marcil said. "I don't think it was on anybody's radar, because it's so rare."
It turns out that Rodin is the youngest patient ever documented with Susac Syndrome, of just 300 known cases in the world.
So instead of starting her freshman year at Coon Rapids High School, Rodin was rushed to the hospital.
"She could not get out of the car," her father said. "We had to get help to put her in a wheelchair."
It got so bad back in September that Rodin couldn't even speak. The series of strokes even took away her vision and hearing.
"They think something in the immune system is misbehaving and causing an attack on those cells lining the blood vessels," pediatric rheumatologist Dr. Patricia Hobday said.
Doctors at Masonic Children's put Rodin on a regimen of powerful steroids and chemotherapy. While she has improved dramatically in the past couple of months, her long-term outlook remains unclear.
"It all depends on how much of the brain, ears and eyes were starved of oxygen to the point that they can't recover," Hobday said.
Her recovery is a grueling test of both patience and time. It was just a month ago when nurses had to help her walk down a hallway – hardly the stamina she had when she played ball and ran the bases.
And while she is still not swinging a bat, Rodin's dexterity and hand-to-eye coordination is returning.
As she points her finger from her eyes to a nurse's moving finger, the nurse told her, "Good, that's really good Abby."
It's progress that is now worth smiling about. She's even being goofy with her older sister.
"She's been a good kid," her father said. "She just kind of looks at it and says, 'It's something I got to deal with and go with the flow.'"
To help defray a mountain of medical bills, the local softball family is coming together.
On a cold winter night, the Coon Rapids softball board gathered to finalize events for the upcoming "Team Abby" benefit.
Mark Wilkins has a tough time keeping it together, while talking about his daughter's friend and the bright star he coached.
"Being the father of girls," Wilkins said, pausing to wipe away tears, "I was just more worried about Abby."
Doctors can't say what Susac's lasting impact will be. Or if Abby will ever strap on the gear again and play ball.
But to those who love Abby the most, that is not what matters.
"We've just got to get her back, get her back to where she was," her mother said.
Rodin's benefit will be held Saturday, Jan. 24, at CR's Sports Bar in Coon Rapids. The spaghetti dinner begins at 6 p.m. with a beer bust from 7:30 p.m. to 9:30 p.m. There is also a silent auction and live music.
For more information, you can visit the event's Facebook page.
