Observer Life: Thursday, May 29, 2003

Erinne's Story

Family Focuses on Raising Money for Wheelchair Lift for a Special Little Girl
by Diane Gale Andreassi

People Erinne Rose Williams never met are digging out loose change from their lunch money and writing checks to help buy her a van lift.

"I'm overwhelmed that people care," her mother, Suzanne Williams, said.  "That this little girl is so important to even people who don't know her, I feel really grateful".

Erinne, 6, has Spinal Muscular Atrophy, a type of muscular dystrophy that affects nerve cells in the rain stem and spinal cord.  She has Type 1 SMA and the average lifespan is 8 months.  (side note: Erinne has Type 2 and no such short life expectancy).

When Erinne turned 6 on May 16, her family played hooky, including Erinne's 17-year-old sister, Claire Yopek, and her 11-year-old brother, Kevin Williams, to celebrate.  The next day was a party at Chuck E. Cheese's with her friends.

"Every birthday with Erinne is special," said Suzanne, a Westland resident.  "We never know how many more we're going to have with her.  I don't want to have any regrets with Erinne.  I don't want to say, "I should have done this" or "I should have done that," short of quitting my job, like she would like me to do."

While Suzanne is optimistic, she's also realistic about Erinne's future considering that 80% of victims are dead before they reach the age of 1 and the majority of those survivors usually don't see their second birthday unless ventilation or life support is provided, according to an SMA Support web site.

HOPEFUL BUT OPTIMISTIC

"However, these statistics are no longer a hard and fast rule, and the more time that goes by, the better quality and quantity of life these children are having," the site explains.

Friends and family are buoyed by the fact that Erinne has already beaten all the odds.  Family members talk about the time Erinne "almost got her angel wings" in 2000.  They call her their "Angel on Loan."  In the intensive care unit at Children's Hospital, Erinne developed respiratory complications after a surgery to release the tendons in her hips and legs so she could straighten her legs and be free of constant pain.

Doctors called family members to her bedside 10-12 times, because they thought she was dying.  Hospital workers were amazed by her recovery, Suzanne said.

"We kept our faith and kept praying," she added.

Two years later, Erinne whips through the rooms on her electric wheelchair in her modest Westland home that she shares with Suzanne, Claire and Kevin.  Suzanne is divorced from Erinne's father, Jim Williams, but he still plays an important role in the family.  Williams works the midnight shift at General Motors so he can stay with Erinne in the morning, goes with her to St. Matthew's Lutheran School in Westland and is with her at home again until Claire returns from school in the early afternoon.  Suzanne is director of Bill Ford Child Development Center in Dearborn.

Almost as if she were pacing on wheels, Erinne goes forward a few feet and throws the gear in reverse.

As she talks, there's something captivating about her blue eyes.

"It's almost as if there's an old soul," Suzanne said.  "These kids all have eyes that you don't ever forget once you look at them."

Erinne reads, does math in her head and recites facts, often gleaned from listening to her brother read encyclopedias.

"She remembers absolutely everything you tell her," Suzanne said.

Erinne's wheelchair is always elaborately decorated depending on the holiday or season.  Almost as if showing off a fancy dress.  Erinne spins her wheelchair in fast circles to make sure every vantage point is seen.  People who have met Erinne are instantly drawn by her quick wit and vivacious personality.

Like Claire's friend, Stephanie Billcheck, who worked for days putting together cream ribbons with pink roses that she and Claire sold to students at their school (Lutheran High Westland) as a fundraiser.

"Erinne is the sweetest little girl you would ever want to meet," Billcheck said.  "And I just wanted to help them."

In April, the girls raised $200 from ribbons sold for $1 each.  Many students donated $5 bills instead.

Lutheran Westland students have gotten to know Erinne through a bulletin board in the lunchroom that Billcheck assembled.  During lunch, they pass around a tin can called Student Cents, asking for loose change to go for Erinne's lift.  Although that tally isn't in yet, Claire said, she believed they've raised about $200.

FINANCIAL SUPPORT

SMA Support Inc., is a charitable foundation that will also accept fully IRS deductible donations in Erinne's name.

A couple of months ago, Suzanne sent out letters to local businesses, family members and friends.  More than $4,000 was raised by mid-May.

"Every day, more checks come in," Claire said.  And every day, they get closer to the $16,000 it will cost for the lift.  "I'm hoping this summer I can be able to get a van and have a lift put on it," Suzanne said, explaining that currently she leases a minivan.

Weighing about 50 pounds, Erinne is getting more and more difficult for her mother to lift.  "These kids tend to be rather malnourished looking," Suzanne said.  "In a way we are blessed that her diet has built her up."

Nearly two years ago, Erinne was frail and couldn't even hold her head up.  She weighed only 26 pounds.  At nearly twice that weight, Erinne looks vibrant and healthy.

Suzanne often chooses to carry Erinne to the car without the wheelchair that weighs 110 pounds.  In the past 8 months, Suzanne has had two surgeries to alleviate the pain from carpal tunnel syndrome.  "Picking up this 110-pound chair would send shooting pains up my arm and it got to the point that it was constant pain," Suzanne said.  "I can't keep lifting the way I'm lifting."

With a crew of supportive family members and friends like Billcheck, Suzanne may make her goal of having a lift in the next couple of months.

"Children with Spinal Muscular Atrophy usually don't live past 2," Billcheck said, referring to Erinne as "a gift from God."  "Erinne is the sweetest little girl you would ever want to meet and I just wanted to help them."

Anyone interested in supporting the fund-raising effort for Erinne's Van lift should send checks to SMA Support at PO BOX 6301, Kokomo, IN 46904, explaining that the money should go to Erinne's fund.  Or, go to any Standard Federal Savings with a deposit slip, account numer 0270025628, and make a deposit in Erinne's account.  Money can't be withdrawn from the account.