It’s all for Cece

Published 10:39 am Monday, August 4, 2008

There’s no smoke and mirrors involved here.

It’s all done with blood, sweat and tears.

Lots of love, too.

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Nothing else will do when a family has a daughter with epilepsy.

According to the Epilepsy Foundation of Minnesota, people with epilepsy and their loved ones don’t need to imagine this. They live with it every day.

People like Aaron and Regina DeVires and the son, Aidan, 7, and daughter, Cecelia, 5 1/2.

“Cece” is a victim of epilepsy and her parents regard her as a gift.

“The thing she has taught me is that somehow as a guy in our society you’re given to work, bring home money and don’t think about your family. Let the wife do that,” Cece’s father said.

“Fortunately with Cece that showed me early on family is more important than anything,” he said.

The present

Epilepsy is a general term used for a group of disorders that cause disturbances in electrical signaling in the brain.

Depending on the part of the brain that is affected, the surge of electrical energy can cause changes in a person’s sensations or state of consciousness and uncontrolled movements of certain parts of the body or of the whole body.

The DeVires discovered their daughter’s problem early.

“When she was about three months old, a couple of relatives noticed around the holidays she had a left gaze preference,” Regina recalled. “We were thinking it was just a visual problem.”

The parents took Cece to a pediatrician, who referred them to a pediatric neurologist and opthamalogist.

“At three months of age she was diagnosed with epilepsy and a seizure disorder and we started her on a lot of medications at that point,” Regina said.

Epilepsy is not genetically inherited. Doctors told the parents Cece’s occurred as the result of an infarction or injury before or during birth.

Since that time, the couple has done much research on epilepsy.

“In the beginning when she was younger, it was definitely more emotional, but now we have moved to a point to where we want to be advocates and that’s why we’re doing the Stroll for Epilepsy and getting involved in other ways to help Cece and other epileptics,” she said.

Aaron has become a member of the Arc Mower County board of directors as he branches into advocate roles for children and adults with special needs.

Regina is a mentor for families with children having special needs.

The shock of discovering a tiny infant has epilepsy hasn’t worn off despite the passing of years.

“We definitely felt the stage of grief and throughout her life we will continue to feel those stages,” Regina said. “It’s definitely a day-by-day thing for us.”

After doctoring with Mayo Clinic, the DeVries family now takes Cece to the Gillette Children’s Specialty, St. Paul.

The DeVries family now knows other families in the Austin area with children who suffer from epilepsy.

When the couple researched the Epilepsy Foundation of Minnesota’s resources, they learned about Sue Ringhoffer, the southeast Minnesota EF coordinator.

Ringhoffer came to Austin and made contact with Cece’s Early Childhood Family Education teachers.

Cece will start kindergarten classes at Southgate Elementary School in September.

The future

Cece finished summer school preschool classes last week.

She has attended Community Learning Center classes in Austin since she was 3 years old.

According to her parents, they are noticing dramatic changes in their daughter’s behavior. “Oh, you bet,” said Regina, “She loves music and the computer. We’ve seen changes in her social skills. Motor skills, verbal and cognitive.”

“We just want to thank the Community Learning Center in the Austin Public Schools District for all that they have done,” she said.

Cece walks with assistance and crawls on the floor when she’s not riding in a wheelchair.

There is no lack of attention for offers of assistance for Cece wherever she goes.

Even at Bethlehem Free Methodit Chuch, where the family attends.

“Pretty much everyone who loves her and cares about her likes to help her,” said Regina. “Anything that anyone does for her is going to be of value to her.”

Cece and her brother Aiden have always been “the best of friends,” according to their mother. “In fact, he was the first one to make her smile and laugh,” their mother said.

The family receives respite care from a personal care assistant.

The family obtained CADI waiver that funded through Mower County a ramp to the DeVries family.

However, Cece requires much attention from her parents, brother and anyone watching over her.

“She requires a lot of one-on-one,” Regina said, including help in eating and getting dressed. “And because of the seizures we don’t want to leave her alone for too long,” Regina said. “The other day she had one in school that was only a minute and a half long, but she has had seizures that have been two hours long.”

The couples’ parents are also very supportive of the special needs of Cece.

Looking ahead, the family knows the risks.

“She will definitely have to have a lot of therapy all the time,:” said Regina.

“There is hope that she will walk someday by herself, but not for long distances,” she said.

“The big thing we are trying to work on at home and at school is communication,” interjects Cece’s father. ‘We can figure out what she’s saying, because we are around her all the time, but other people can’t understand her.”

“We want to get her to a position so that she can communicate with anybody enough to get her needs across,” he said.

The couple’s goal is to help their daughter grow independent enough to live on her own.

The stroll

The 2008 Stroll For Epilepsy takes place Thursday, Aug. 14 in Rochester.

Other fundraising walkathons will also take place in St. Cloud, Twin Cities, Duluth and Fargo-Moorhead.

Interested participants may register online at or call (800) 779-077 Ext. 2310.

For more information locally, call Regina DeVries at 438-1036.

Thus far, the family has raised $216 in pledges for the 2008 Stroll For Epilepsy.

Online donations can be made at\ceceliadevries.