A Challenging Past Inspires 'A Brighter Today'

By Adam Modzelesky
EpilepsyUSA staff
Posted: July 27, 2004

The toughest moment of Tracy Ferguson's life was when she thought she would have to say goodbye to Cooper, her 2-day-old son.

On July 19, 2000, Cooper Wagner entered the world, and just as soon as he arrived he almost left. Doctors had to resuscitate the 2-minute-old infant multiple times, making the newborn's chances of survival grim and prompting Ferguson to plead, "God, please take me. Just let him be okay."

Ferguson's prayer for her son was answered. Cooper's prognosis came back positive from the nurses who said he would be able to go home in about a week. But that changed the next day when the hospital's chief of neurosurgery informed Ferguson and her then-husband Ken Wagner that he'd noticed blood in Cooper's eye, prompting him to order a CAT scan. The test showed that Cooper had suffered a massive hemorrhage on the right side of his brain and the entire right hemisphere had crossed the mid-line into the left side of his brain. The surgery was meant to try and relieve the pressure on the left hemisphere.

It was time for a decision: operate and Cooper could die in surgery, or do nothing and take the chance that he would not make it through the night. The new parents had only a few minutes to decide for their two-day-old baby.

They elected to do nothing.

As Ferguson put it, "If God is going to take him, then I want him to be taken with a whole brain." This was the toughest moment of Ferguson's life, facing the fact that her first-born's life might soon be over.

But, for the second time, Cooper cheated death and lived to see another day. Up to this point Cooper hadn't even gone a full day without doctors thinking his time was nearly up, but he continually defied the odds. When he was 6 months old, Cooper began having seizures. 

Today, Cooper is a tenacious 4 year old who has been seizure-free for one full year. Last July he underwent another surgery that involved removing one-quarter inch of his right occipital and right parietal lobes. Since then, he's been without incident.

"I would recommend [the surgery] to every parent," Ferguson said. "Every parent who has a child that has reached a point where having a seizure is dangerous. Because it got to the point where it was dangerous for [Cooper] to have just one seizure."

And though the fight isn't over, the toughest part is now behind them, right? Well, not exactly. Ferguson and Cooper are about to embark on a completely new, but more positive and challenging adventure. Cooper's trials and tribulations inspired Ferguson, who earned her M.B.A. from Golden Gate University in San Francisco, to begin work in September 2003 to open a non-profit daycare center for medically fragile children, called A Brighter Today.

"Epilepsy is near and dear to my heart," Ferguson said, "and I am dedicated to providing a center that will care for children [who have epilepsy]. That's our specialty, caring for kids who have epilepsy."

The first of what Ferguson said would be many centers, opened June 1. She said that A Brighter Today has plans to open 22 centers in California, as there are 200,000 children with epilepsy in the state, 11,000 in Ferguson's Alameda County alone. All of the centers will be non-profit and it is Ferguson's ultimate goal that A Brighter Today becomes a nation-wide presence, as she "really wants to change the way special needs children are cared for."

"Typically, kids that are medically fragile - that includes kids who have epilepsy - are cared for in home nursing centers," Ferguson explained. "As a parent, you don't know what's going on at all times. There's always that question, ‘Is my child being taken care of and safe?' In my own past experience, I would come home from work and find nurses sitting on the couch reading books, not following the schedule that I had set out for them to follow for Cooper. And when he was having 60 seizures a day, they needed to be right there with him by his side at all times."

A Brighter Today is projected to operate on an annual $1.2 million budget. Thus far, Ferguson has paid for every single expense out of her own pocket. To date, she estimates that she's put $115,000 of her own money into the center – and she's a 32-year-old single mother.

"I probably won't see a paycheck for six months," Ferguson said with a chuckle. "I was really lucky in that I saved well. I would eventually like to get paid back and earn a salary, but it's hard to get grants and start-up funds."

The center has a vendor relationship with California's Regional Center, which is funded by California's Department of Developmental Services.

"I think it's a wonderful thing that she's doing for the epilepsy community," said Neva Hirschkorn of the Epilepsy Foundation of Northern California. "[My son has epilepsy and] I remember researching daycare centers, and lots don't want to take the children with epilepsy. A Brighter Today frees up mothers to enter back into the work force."

A Brighter Today has two programs: an infant and toddler program (for ages 1 month-23 months), and a pre-school program (for ages 2-5 years). The center employs a top-notch staff, including a licensed vocational nurse, staffing for non-ambulatory children, staffing for non-ambulatory children who weigh more than 25 pounds, a 30-hour-per-week infant pre-school teacher and a part time nutritionist. All of the teachers on staff have masters degrees, and they all have experience with kids who have epilepsy and cerebral palsy.

"Granted it is no picnic being a single mom with a special needs child," Ferguson said, "but I will tell you that Cooper has taught me more about love, faith and commitment in his short life then I had learned in my previous 29 years. Without this challenge, there would have never been 'A Brighter Today.'"

Editor's note: For more information about A Brighter Today, go to http://www.abrightertoday.org.