One Family’s Commitment to Giving Back
Houda Foster, from Buenos Aires, and her husband Jim Foster, from Kansas City, met in Madrid many years ago and now live in New York City with their eldest son, Georges, and a golden retriever named Aaliyah. Their youngest son, Matthew, also lives with them and is studying at New York University. Georges has epilepsy, neurological impairment and developmental delay. He is fully dependent and can’t walk, talk or feed himself. He is their star and the entire family is devoted to him. Georges attends a day habilitation program at United Cerebral Palsy of New York City.
The Fosters believe in giving back to the community, and that’s why Houda serves on the Board of a small community group in New York City that helps battered women and their children get into permanent housing while Jim has volunteered for the Adaptive Sports Foundation for six years (see sidebar for more information on the Adaptive Sports Foundation). The Foundation is something Jim can share with Georges, since Georges is an avid skier in the Foundation’s winter skiing program.
EpilepsyUSA: When was Georges (Georgie) diagnosed with epilepsy?
The Fosters: When he was four months old.
EpilepsyUSA:What has been the course of his treatment?
Houda: Shortly after we discovered he was having seizures, at times he was having up to a hundred full seizures each day. Sometimes he would even stop breathing—we went through every imaginable medication—phenobarbital, Dilantin, all of them. We even tried the ketogenic diet and ACTH for infantile spasms. The two we didn’t try just weren’t right for the seizures at that time.
Jim: We tried steroids and he puffed up like a balloon. I was afraid for his health—he seemed to be very unresponsive. He was initially very responsive to the steroids, but then he went into a vegetative state. But before we started trying all of the different drugs, we went through the discovery phase—trying to figure out what happened, what was the cause of it all? Genetic, environmental, what? You’re hopeful you’ll find something. I know we wanted to try every possibility of correcting the situation—of finding a solution that would improve his life.
Houda: In general, we’ve been very lucky with Georgie’s doctors—his pediatrician was wonderful. That pediatrician was starting his private practice when we first saw him and we stayed with him for 20plus years.
Jim: You have to realize that even the best of doctors sometimes address these situations in a way that isn’t always sensitive to parents’ feelings. When we as parents came to the realization that this was not a curable condition, we came to accept Georges for what he is and he has given us more joy than we ever thought possible.
EpilepsyUSA: How has the treatment been going over the years?
Houda: Georgie’s seizures have never been controlled 100 percent and some medications have resulted in reduced awareness and responsiveness. We don’t want to jeopardize his ability to relate to his environment. If he’s nonresponsive to his environment—doesn’t know what’s going on—then what’s the point? We recently discussed this with his neurologist who is an epilepsy specialist. Georgie’s currently on a drug regimen where his seizures are less frequent and he generally relates and responds to people and his environment. We conveyed to the doctor that we wanted to balance the level of his seizures while ensuring that he isn’t overmedicated because then he couldn’t enjoy things because he wouldn’t even be aware of them.
Jim: How much Georgie can experience the outside world and various stimuli is critical. If he laughs on the ski slopes and responds to us when we call his name, we feel his medication is at the right level.
Houda: If you control the seizure and your child is totally out of it, then what’s the point? They need the balance— it’s extremely important.
EpilepsyUSA: Why do you support the Epilepsy Foundation?
Houda: I believe people support causes that are dear to their hearts. In the case of the Epilepsy Foundation, there is a critical connection because Georgie has had epilepsy since he was four months old. More and more, I channel my giving into a few things that are close to my heart. And also, I give to the organizations that work most efficiently.
Jim: Organizational efficiency is critical. But research is extremely important to me as well. Our niece began having seizures when she was 40, so we have more than one reason to donate. We want to see epilepsy research expanded so as to understand what the causes of it are. Not necessarily specifically for Georgie, but for the greater population as a whole and for future generations that may go through what we’ve gone through.
EpilepsyUSA: Tell me about Georges. What are his interests? What does the family do together?
Houda: He has always been fully integrated in our lives. We take him to movies, travel with him, et cetera. He doesn’t have the intellectual capacity to differentiate between most people, but he knows who the key people are in his life. The moment Georgie hears one of our voices, he gets very excited.
Jim: He loves music, water, cuddling. He’ll put his head on your shoulder to tell you that he wants to be with you. He also really enjoys skiing and typically the outdoors wears him out but he also likes to swim.
Houda: Here’s a wonderful story: We were out West and he had skied with us the whole day—he was laughing on the slopes and the wind was on his face and he was really enjoying it all. Then we went to a heated outdoor pool and he was kicking and splashing in the water (with his life preserver on, of course) and Matthew was there, too. At one point, Jim and I realized he wasn’t splashing anymore and we looked over and he was totally asleep on the water! It was fantastic and we kissed him awake.
EpilepsyUSA: What about Georges’ brother Matthew— when did he know about Georges’ epilepsy?
Houda: He was born with Georges next to him and so he knew from the beginning that Georges was different. Matthew told us that when he’s older, he wants to be a doctor so he can take care of Georgie! Matthew (he said this when he was 16): “I have to have freedom and do everything I want in my wild years. But when I’m 30, I’ll take care of Georgie.”
Jim: Matthew is very protective of him. When we were looking at different options for how to care for Georges, Matthew became very concerned about us sending Georges away. Matthew said, “If you send him away, I would not think very highly of you.” He said that twice. Matthew also recently told us, “As a result of growing up with Georges, I will know how to take care of a special needs child.”
EpilepsyUSA: What would you say to another parent whose child has just been diagnosed with epilepsy?
Jim: When you first find out, it’s devastating. But in my experience, the special needs population is a joyful population. We’ve seen parents give up on their kids—but it’s very important for every child to realize their potential, so you have to be engaged with them. Parents have to be very much on top of it and advocating for their kids in every possible way.
Houda: Raising a special needs child is a lot easier than you might think right now and a lot happier than you might think right now.
Jim: People consider a condition like this to be so much of a strain. But parents in our situation will find out their special needs children are often much easier to raise than their other children!
Houda: Julius Caesar had epilepsy! Epilepsy in and of itself doesn’t have to have negative connotations. I feel I’m blessed having Georgie and he isn’t a burden at all.
EpilepsyUSA: Overall, how has epilepsy impacted your lives?
Houda: Georgie being Georgie has made it possible for us to educate others about epilepsy and about his special needs. Our friends know and love Georgie but there are many people—on the streets, at the park—who don’t understand and we take the opportunity to educate them. As Georgie’s parents, we feel very fortunate to be able to expand their minds.
Jim: As a society we need to come to the realization that there is room for everyone with every possible physical condition in the world. Breast cancer awareness spiked and suddenly everyone was sympathetic and even empathetic to people who had it. People living with epilepsy need that same level of acceptance and understanding.
EpilepsyUSA: Do you have anything else you’d like to say?
Houda: Celebrate their lives. We’ve accepted Georgie’s condition as normal. Georgie is the light of our life—he’s our teddy bear, our grounding.
Jim: We have friends who call us heroes. We’re not heroes, we’re just parents.
Adaptive Sports Foundation/ Adaptive Sports Center
Celebrating its 25th year, the Adaptive Sports Foundation offers winter and summer sports to children and adults with special needs. The Foundation believes that differently abled people need only to realize just how much they can do and be able to say, “If I can do this, I can do anything!” to realize all they are capable of. This boost of confidence spreads to all life activities and increases their self-worth and self-esteem.
The Adaptive Sports Foundation is the largest adaptive sports program on the East coast and is considered among the best such programs in the country. Its activities include a wide variety of sports, levels, and types of programs, including competitive activities, lessons and Wounded Warrior programs exclusively for disabled veterans. For more information, please visit www.adaptivesportsfoundation.org.