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Epilepsy Advocate
Strength in numbers™

When Michele W. found out her daughter had epilepsy, she gave more than love—she passed on the will to never give up.

The October days grew crisp, and Michele W. felt her baby daughter kick inside her. She and her husband, Rob, had counted down the days by attending Lamaze classes at the birthing center near their home in Pitman, N.J. and preparing the house. They thought they would be ready for their youngest child in every way. Rachel was born full-term, perfect and healthy. Swaddled in pink, she soon joined the bustling household, which included four siblings aged six to eight. Michele and Rob looked forward to introducing their brand-new addition to their family and friends over the holidays.

On Thanksgiving Day, however, something odd happened. After breast-feeding, Rachel threw up repeatedly. “It was a holiday, so our pediatrician suggested we go to the ER,” Michele says. “They took X-rays and vitals, and everything was fine. We went to Rob’s aunt’s house for Thanksgiving dinner, but by the time we got there Rachel was crying hysterically.”

By the time they reached the ER again, Rachel’s little body arched to one side in pain and was stuck in a C shape. The attending physicians whisked her to radiology and ordered a CT scan. The scan confirmed that Rachel had experienced a stroke. Rare in infants, Rachel’s condition had no known cause. The neurologist cautioned against too much optimism: There was great likelihood that she would never walk or talk. At this news, Michele crumpled to the floor.

Defying the Odds

From that moment Michele and Rob’s world changed. Michele camped beside the incubator in the Neo-Natal Intensive Care Unit for two weeks. Although Rachel was medicated for hers seizures, her body didn’t straighten out for three days. The family went to church on Sunday, and their congregation prayed over them in proxy for Rachel’s healing.

When they returned to the hospital, Michele looked at her daughter and gasped: “She’s straight!” Her first joyful impulse was to ask the nurse to take out the feeding tube so that she could nurse Rachel. “They looked at me like I had three heads,” Michele says, “but they let me try to nurse her.” A day earlier, the medical staff had said that Rachel would have to be re-taught how to nurse, yet she latched on immediately. “We truly believed we received a miracle that day,” Michele says.

After two weeks, Rachel came home. “The physical therapist couldn’t believe this was a baby who had a stroke,” Michele says. “He told me that 60% of children who go into that posturing position never come out of it.”

For the next six months, Rachel remained on antiepileptic drugs (AEDs), and her condition seemed to stabilize. Although she had limited use of her left hand from cerebral palsy caused by her stroke, she thrived. At 18 months, Rachel learned to walk. When her doctor took Rachel off the AEDs, Michele thought the worst was over. Then one morning Rachel woke up screaming with a complex partial seizure that lasted for 45 minutes. Though a diagnosis of epilepsy would not come for a few more years, “that was the beginning of our journey,” Michele recalls.

Over the next three and a half years, Rachel continued to have complex partial seizures despite the medication. The whole family learned how to help Rachel. Michele unearthed the baby monitor from the basement and slept with it by her head so she could hear Rachel during the night. She tried various dietary changes (sugar may be a trigger) and set a strict bedtime. Still, nothing abated the seizures. “I got to know all the ER doctors on a first-name basis,” Michele says. “We went through every AED available, weaning on and off, month in, month out. It was a rough process.” None of these efforts helped for long, and the family’s medical bills began to mount.

Yet the more Rachel grew, the more determined she was to keep up with her siblings. By age four she had learned to play basketball and baseball and to ride a trike. Whenever she fell, she got right back up.

For her part, Michele learned how to set her own limits and take help where she could find it. “Thank God for the Crock-Pot,” she says with a laugh. “If it weren’t for that, we would have eaten a lot of sandwiches.”

Persistance Pays Off

Michele soon discovered Epilepsy Advocate, and she and Rachel were invited to join. Rachel became one of the group’s most charming and effective ambassadors. “Rachel and I wanted to help other people with epilepsy,” Michele explains, “so they wouldn’t go through the same learning curve we did.”

Another resource Michele discovered was the Canine Assistants program. Through it the family received their eighth member: Cappi, a specially trained seizure response dog. Cappi refused to leave her friend if she sensed that Rachel was going to have a seizure. “Although she’s Rachel’s dog, I feel like we got her for me,” Michele says. “With Cappi I didn’t have to worry about Rachel having a seizure during the night. I call Cappi my blonde daughter.” All the while, Michele and Rob wrestled with the challenges of mounting medical costs. At last Michele chewed through a mountain of paperwork and red tape to get Social Security assistance. “Most people just give up when their request is first rejected,” she says. “It took us three tries, but we finally got the help we needed.”

Persistence also paid off with respect to Rachel’s epilepsy therapy. After witnessing years of uncontrolled seizures, Michele provided doctors with an important clue: “Rachel kept having nausea spells, and her doctor thought it was a side effect of the drugs. I heard that nausea could signal a seizure, so we got a second opinion and discovered that these spells were indeed another form of seizure.” By increasing her AED dosage, Rachel was able to finally gain control of her seizures.

Regular Kid

In the fall of 2006, the child who was not expected to walk or talk headed off to kindergarten. From kindergarten through second grade, Rachel split her days between the public school classroom and a special-needs center. There, she demonstrated a talent rare in young children: empathy. “There were some children in her class who had serious needs,” Michele says. “Rachel became the ‘momma’ to them, looking after those kids and helping out.”

Yet as Rachel gained more independence, her parents experienced new challenges. “No one told me to expect the developmental delays,” Michelle says. “When Rachel began struggling with reading and math, we found out these delays are typical for kids with epilepsy. It would have been nice to have known that earlier.”

Now in fifth grade, Rachel continues to receive assistance with schoolwork but takes it all in stride. Earlier this year, the tenacious 11-year-old convinced her school’s principal to hold a Purple Day celebration. She also marched in the National Walk for Epilepsy in Washington, D.C. and is frequently called upon to address groups as an Epilepsy Advocate. Someday she hopes to help train puppies for Canine Assistants. “You don’t just train dogs,” Rachel says. “You’re giving people something they need to survive.”

Having beaten the odds, Rachel has a twinkle in her eyes that speaks volumes. “I want everyone to know that people with epilepsy can do everything they want to do,” she says. “Just look at me. I can do anything.”

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Chris's Story: Lost and Found

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As a church pastor, Chris was accustomed to supporting others. When a life-threatening illness brought on epilepsy, he faced a humbling role reversal.