Center helps family deal with child’s Rett syndrome

TAYLOR — Seeking a larger house to accommodate a growing family, nine years ago Chris and Barb Savoie moved from Southgate to Taylor a month after their youngest daughter, Nikki, was born.

The house is about 1 1/2 miles from Penrickton Center for Blind Children. At the time, the couple had no idea Penrickton would come to play a key role in the family’s life.

Chris Savoie is a custodian in the Taylor School District. Barb Savoie works for the U.S. Transportation Security Administration at Detroit Metropolitan Airport.

About a year after moving in with their three daughters, the Savoies noticed a change in their youngest daughter.

“Nikki was born normal,” Chris Savoie said. “At 14 months, she started to regress.”

She eventually was diagnosed with Rett syndrome, a neurological disorder that affects girls but is not detectable at birth.

Before the disease took over, Savoie said his daughter was developing quickly and at nine months was talking in short sentences.

“Nikki started to get lethargic and we stopped seeing progression and saw regression,” he said.

“We were devastated when this first happened,” Savoie said.

“Seven years ago, as she was losing her eyesight, I decided to get her the biggest TV I could find.”

As he was purchasing the TV, Savoie said he saw Julia Roberts on TV as the celebrity spokeswoman for Rett syndrome.

“Finally, that day I was able to accept what happened to her,” he said.

He and his wife learned all they could about Rett syndrome.

“It’s one of those things that happens to every so many children,” he said. “There’s no cause or reason for it. Both of our other daughters are fine, healthy.”

Nikki is severely handicapped. She cannot use her hands or legs and is unable to talk. The disease causes regression in her development, and then she hits a plateau, then regresses again and plateaus again, her father said.

After Nikki was diagnosed, a social worker at Henry Ford Hospital told the family about Penrickton Center, Savoie said. He had driven by the center, but thought it was just a school for blind children.

“We went in for an interview,” he said. “They put us on a waiting list.”

Several months later Nikki started at Penrickton in a day-care program and eventually was enrolled as a resident.

It was very humbling for him and his wife to realize that they were not able to provide everything their child needed to reach her potential and that others could do it better, he said.

“As a parent, you want to do everything for your child,” Savoie said. “When your child’s needs are beyond your capabilities, and you can’t give them the things they need to have a productive lifestyle … (and you) end up at a place like Penrickton Center, a place where your child can achieve at a greater level, it is humbling and you say to yourself, ‘Thank you God for Penrickton Center.’”

People have asked, ‘How can you do that?’ Savoie said. “I say, ‘How can I not do it?’”

He said it is not just a place for Nikki to spend the night, but an environment where she can be helped to work on her motor skills in a way that can’t be done at home.

“She’s able to do things the doctors said she would never be able to do,” Savoie said. “The doctors told us she wouldn’t live to be 8 years old. Now she’s 9. I don’t think we would have had her this long if not for Penrickton. They’re just wonderful.

“She knows people can be pleasant to her; she feels the love. There’s not one time I’ve been there that she’s not lit up like a light bulb.”

As a resident at Penrickton, Nikki spends Sunday nights through Friday afternoons at Penrickton and weekends and holidays with her family.

A school bus picks her up every day at Penrickton, takes her to school and returns her to the center at the end of the school day.

She receives physical therapy, tracking exercises and other care her parents cannot provide at home.

“She is not restless or bored,” her father said.

She returns to Penrickton at 7 p.m. Sundays, ready for bed, and the Savoies sit with her, read to her and stay until she falls asleep.

Penrickton Center has made life better for Nikki, and easier for the rest of the family, her father said.

It is like a second home, Savoie said. They have always made the family welcome. He, his wife, daughter Shannon and stepdaughter Jennifer have been included in many activities. And, most importantly, he said he knows his daughter is well cared for and happy there.

“I don’t know what I would do without it,” he said. “I’m not saying we wouldn’t or couldn’t, I just appreciate what they have done.

“What they accomplished has amazed Nikki’s doctors.”

Through his experiences at Penrickton, Savoie said he has learned he is not alone, and that other people do care.

He said he is reminded of that each year when the annual Ride for a Reason to benefit the Penrickton Center is held.

The annual event attracts bikers from across the state who ride from Cabela’s in Dundee, past Penrickton, and conclude at Biker Bob’s Motown Harley Davidson on Telegraph Road.

This year’s event will be held June 7.

The family has attended the Ride for a Reason since Nikki was at the school, Savoie said. About five years ago he decided to videotape it.

“We’re at Penrickton and they ride by,” Savoie said. “The first time I was videotaping the motorcycles, I was overwhelmed by the number of bikes that go by. I got choked up and the camera went to the ground because I realized they were making a difference for my daughter. It was so many bikes, I was so full of joy, love.”

Bikers will gather at 10 a.m. at Cabela’s, head out at noon and complete the ride at about 2 p.m. at Biker Bob’s.

“My heart is full of gratitude for all of them,” Savoie said.

The people who work at Penrickton, the volunteers and the bikers all help to make life better for his daughter and other children at the center, he said.

“And I know I speak for the other parents at Penrickton,” Savoie said. “They are making a difference in the lives of our children.”

Rett Syndrome

Rett syndrome is a neurodevelopmental disorder that almost exclusively affects girls.

A child with Rett Syndrome appears to grow and develop normally and then gradually, mental and physical symptoms appear, according to the National Institute of Neurological Disorders and Stroke Web site.

The age of onset of the syndrome and the severity of symptoms vary from child to child.

Loss of muscle tone is usually the first symptom. As the syndrome progresses, the child loses purposeful use of her hands, the ability to speak, and motor functions.

Rett syndrome is caused by mutations of a gene found on the X chromosome, which is believed to control the functions of several other genes.

It affects one in every 10,000 to 15,000 live female births and occurs in all racial and ethnic groups worldwide. Boys with the defect usually die shortly after birth.

Although Rett syndrome is a genetic disorder caused by a faulty gene or genes, fewer than 1 percent of recorded cases are inherited.

There is no cure for Rett syndrome. Treatment focuses on symptom management, medication for some symptoms, and occupational therapy, physiotherapy and hydrotherapy to help with a child’s mobility.

Some children with Rett syndrome might require special equipment and aids to accommodate their symptoms as well as special academic, social, vocational and support services.

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