Positive influence: Canton girl won't let muscular disease slow her down

By Brad Kadrich • OBSERVER STAFF WRITER • February 18, 2010

During a recent visit to her orthopedic surgeon, Erinne Williams heard another young girl sobbing uncontrollably in another room, and decided she might be able to help.

So Williams, a 12-year-old seventh-grader at East Middle School in Plymouth, went into the room to comfort the tearful patient, who faced a surgery that had her frightened. By the time the visit was over, the girls — complete strangers just minutes before — had exchanged e-mail addresses and become good friends.

What made the visit most poignant — and, it turns out, completely characteristic — was Erinne's own medical history. As a patient suffering from spinal muscular atrophy (a form of muscular

Erinne Williams got some good cuddling out of big brother Kevin Yopek after her December 2009 surgery.

 dystrophy), she's been in the hospital 18 times, had 12 surgeries to correct severe scoliosis and has four metal rods in her back. Confined to a wheelchair, Erinne has already confounded doctors' expectations; they said she wouldn't live past the age of 8.

“Here's Erinne in her wheelchair, the other girl has very different reasons for her problems,” said Dr. Michael Mendelow, Erinne's surgeon. “I didn't think they'd connect that way, but they did. That's an amazing connection to watch.”


It's a connection Erinne's mom said her daughter makes with everyone. She was diagnosed with SMA, a disease her mom calls “Lou Gehrig's disease for little kids,” when she was 14 months old. She has been near death — “She coded six times in one hospitalization,” her mom said — to the point where one doctor suggested ceasing life-support efforts.

Erinne's most recent surgery came Dec. 22. She came home the next day and was hanging out with friends the day after Christmas.

“She just doesn't let these hospitalizations slow her down,” said Suzanne Williams, a Canton resident. “She's just go, go, go. She knows her diagnosis is terminal, and she hasn't let that affect her life. She's the first to say doctors said she wouldn't live past age 8, but ‘Look at me now.'”


Erinne doesn't like to let her condition slow her down. She's forced to use a lot of machines, including a ventilator and a feeding tube. Still, she plays three wheelchair sports: hockey, soccer and baseball. Her friends accept the limitations “as part of Erinne's life,” her mom said.

“Basically, I look at everything as a positive side,” Erinne said. “It comes from experience. Other kids are down, and I try to help them cheer up. I go to hospitals, I really try to help everyone.”


Friends and teachers agree Erinne is also an inspiration in the classroom. East Middle School Assistant Principal Tara Botosan said Erinne is very intelligent, a huge participator in class and “brings a lot to our building.”

“Erinne is just an inspiration to our student body,” Botosan said. “She's someone everyone loves, staff and students. She really is one of the nicest kids you'd ever meet. She's a wonderful young lady.”

East Middle School teachers, students and administrators signed a banner hoping to convince those at the ABC show ‘Extreme Makeover: Home Edition' to build a new home for Erinne Williams (right) and her family. (Mary Holaly)

That's why Botosan and the rest of East Middle School were so willing to host a pep rally last week for Erinne and Suzanne, a single mother — she also has a 24-year-old daughter, Claire Yopek, and an 18-year-old son, Kevin Yopek — living in a non-handicap-accessible apartment in Canton. Erinne's doctors, Mendelow and pediatrician Mirka Soler, sponsored an application to the ABC-TV show Extreme Makeover: Home Edition to have a home built for the Williamses that would allow them to move out of their apartment and build a better life.

The pep rally at East was videotaped so it can be submitted to ABC as supporting material to the application, which is still pending.

“I think it'd be really easy for her to be sad and disappointed (in life), but she's so opposite of that,” Botosan said of Erinne. “She lives every day to the fullest. We want to do whatever we can to help her family be selected.”

The rally touched the hearts of both Suzanne and her daughter.

“It was really touching that people cared enough for Erinne,” Suzanne Williams said. “But Erinne has touched a heck of a lot of people.”


Suzanne Williams said the new home would not only help Erinne in the short term, but also be good for the family in the long run. At 5-foot-9 and 110 pounds, Erinne can be a handful to lift the six or seven times a day she must be carried. The wheelchair weighs 420 pounds and doesn't fit into many of the rooms — including the bathroom or bedroom — in the Williams' apartment.

“I have a couple of bulging discs in my back, so it's only a matter of time before I have problems,” Suzanne said. “But we take life one day at a time. You play with the hand life deals you.”

The prospect of a potential new home is thrilling to Erinne, who appreciated the support shown at her school.

“It's really cool, I'm excited for it,” Erinne said. “We've never had this much support. No school has ever done anything like this. It makes me feel really good. I can't describe it.”

bkadrich@hometownlife.com | (313) 222-8899