Fathers: Our Children with Epilepsy

Fathers whose children have epilepsy meet the challenge with courage, creativity and dedication. The stories we present here are of three fathers who shared their thoughts with epilepsy.com. Each father was determined to do something, oftentimes to overcome the stigma and bring about awareness, hope, and help for their children and for sons and daughters everywhere.

Marcel D'Auteuil is a businessman and head of the André D’Auteuil Family Foundation. "When my son was born 30 years ago they told us that he had to be vaccinated. After the first shot, the child seemed to shudder and almost go into a seizure. But they told us not to worry. And we were reassured."

"Nonetheless we were concerned when we took the baby for his second shot. Once again the child shuddered in a way that seemed like he was going into a seizure. We didn’t want to bring him for a third shot, but he seemed fine. After that shot our son was rendered completely retarded as a baby. It was devastating to our family. We learned later that the drug itself was defective. Although the drug company gave our family a settlement to have our son taken care of for life, our son has no real life."

"He is in a group home. And for me it is very reassuring because the home is run by a former high school classmate. Nonetheless, my wife and I are very involved in our son’s care. While we are 100 percent blessed by the care our son receives at the group home, we still need to be vigilant."

"Not long ago, André was hospitalized and during a change of shift a new nurse came on board. We learned that his medications had not been administered yet and I told the nurse that André needed his seizure medications. She said she couldn't locate his medication chart and that she asked him about the medication, but he wouldn’t tell her which medications he needed."

"I remember saying, 'Of course he won't -- he doesn't talk.' I asked the nurse to contact the group home where André was living because they keep a medication list at the group home. I had to tell the nurse to have the home fax it over because André began having such seizures. He is the child we call Our Angel. Children such as André who are non-verbal need an advocate so they get the proper medical care, or any care for that matter," he said.

In order to give back and help other children with epilepsy and disabilities, the family formed a foundation for people in the area to provide funding for medical and adaptive equipment.

Marcel said, "We learned that children couldn’t go to the beach because wheel chairs get stuck in the sand. We found a company and we make the chairs available. In fact, they are designed in such a way that the child can go right into the water with the chairs. For us, it is a way to give back with grants which we offer though the foundation." For more information, go to: http://andrefoundation.org/index.htm

Randy Siegel is President and Publisher of PARADE magazine. He wrote "More Than Hugs", the story of his family, for Newsweek. He spoke with us because he felt it was important to reach our online community. "Patients, parents, and caregivers of those with epilepsy come to epilepsy.com because it is a tremendous resource. And I would like to share Rebecca’s story with those who live with similar challenges each day," he said.

"I was trying in my own way to generate more public awareness of epilepsy, which 3 million people deal with on a daily basis in the United States. When you add family, friends, and caregivers, the number is quite a bit higher. Epilepsy is a major disorder and deserves more attention than it receives currently. It is my hope that more awareness will bring increased levels of research funding for treatment, and one day a cure," he added.

Randy pointed out that according to the CURE Epilepsy website, in 2005 the National Institutes of Health spent $39 per patient for epilepsy, which affects some 3 million Americans. The combined per patient total for those who suffer with autism, multiple sclerosis, and Parkinson’s disease is $607 and the combined total of those affected is 3 million people.

He said, "This commitment of NIH funds is admirable and important for these three medical conditions. We would like to see a comparable commitment made to people with epilepsy."

"My wife and I are very involved in the epilepsy community. We try to be a resource for parents with a child who is newly diagnosed with epilepsy. These parents have so many concerns and recognize that their child often has profound needs. But we meet many people of all ages who are struggling physically, emotionally, and financially, due to epilepsy, every single day of their lives."

Warren Lammert is Co-Founder of the Epilepsy Therapy Project. In writing a foreword to a book in the Brainstorms Series (Oxford Univ Press), he tells us the following: "The day-to-day challenges of living with epilepsy are significant and fall to the entire family, but my wife Kathy has been our backbone of support in meeting those challenges. And Sylvie is a happy and tenacious girl who manages to rise above her epilepsy. She is a delight and inspiration in our lives. Nevertheless, for me and our family, epilepsy has continued to be a burden and enemy for a little girl that we love, as it is for so many others.

"As a father, I was not willing to accept that Sylvie would have to live with seizures. I went to Sylvie’s doctor, Orrin Devinsky, MD, and expressed my desire to do what I could to make a difference. A partnership developed from that conversation that quickly grew to include like minded parents and professionals and the Epilepsy Therapy Project (ETP) was created. It is entirely focused on advancing new therapies for those living with epilepsy."

"Through the ETP our award-winning website epilepsy.com (www.epilepsy.com), emerged. The community has exploded as an online gathering place where families and persons living with epilepsy meet to pose and answer questions and to share experiences and learning from the frontlines."

"This is a community we wish we could have gone to 9 years ago. We would have asked how to get a 9-month-old girl to swallow her then 3 different medicines, which she had to take 4 times a day, a process that alone consumed two to three tense hours of each day. And it is a place we could have learned that our fears and challenges were shared by others and that a little knowledge and support could go a long way towards giving us the energy to forge ahead," he said.

What we learned from each father is that epilepsy never affects just one person. Families may become involved in almost constant care and concern. Despite the obstacles, the exhaustion, and the worry, the fathers we spoke with, like the mothers we heard from on Mother’s Day, talk of resiliency and resolve to educate others, eradicate the stigma, and work towards a cure for epilepsy.

Submitted on May 23, 2008
Edited by Steven C. Schachter, MD