A Child’s Struggle: Canine Therapy Brings Healing and Normalcy to Dravet Syndrome Patient
By Guadalupe Rabadan
Like any new mother, when my son JanCarlo was born, I absolutely fell in love with him. My first priority was, and is, to keep him safe and healthy. In September 2006, when JanCarlo was only nine months old, I experienced every mother’s worst nightmare - that’s when he had his first seizure. It lasted for 12 minutes. I was terrified for him. I prayed it would end and that he would be okay. My prayers were answered, at least temporarily. For the next month, JanCarlo was fine and had no more symptoms. But by November, I had a feeling that something was not right. Sure enough, he had another seizure. We spent his first birthday - a day we should have spent celebrating – in the hospital. He was not running a fever, and there was no apparent reason that triggered it. His EEG was normal, but I desperately needed to know the reason this was happening.
To get an answer, we needed more tests. JanCarlo had additional EEGs as well as MRIs and blood tests…but still no answers. Meanwhile, the frequent and lengthy seizures continued. Each one was scary: sometimes they would last for hours, and he would even stop breathing. I wanted a normal life for JanCarlo, but instead of frequent trips to play at the park, we had frequent doctor visits and trips to the emergency room. Finally, we got an answer. JanCarlo has Dravet Syndrome. This rare form of epilepsy causes long and frequent seizures and causes developmental delays, among other things. Worst of all, Dravet Syndrome is lifelong, meaning he will never be fully free of its symptoms.
JanCarlo needed early intervention, but treatments for this syndrome are limited. We began weekly speech, physical, and occupational therapy sessions at home. Once in school, JanCarlo started in outpatient therapy at Advocate Children’s Hospital–Park Ridge. Despite the difficult work that lies ahead, JanCarlo always loves coming to the hospital. The staff takes great care of him, and he made friends with everyone. We are committed to his therapy, and with hard work and dedication, he made a lot of progress.
Not too long ago, JanCarlo’s therapists suggested introducing a therapy dog into his appointments. That’s when we met Billy, a wonderful Golden Retriever, and his handler, Julie. Now, more than ever, he looks forward to coming to the hospital! Each week, the therapists incorporate Billy into our therapy sessions. They might show JanCarlo how to give Billy commands to work on his speech or instruct him to build a hula hoop tunnel for Billy to run through. When Billy is there, they are just having fun – he doesn’t realize that all of their games are furthering his therapeutic goals. JanCarlo loves feeding Billy apples and dog treats as rewards for his hard work.
JanCarlo has opened up since he started working with Billy, and I’ve noticed big changes in him. Teaching Billy makes him feel better, and more empowered in his situation. His speech is clearer and more specific as he gives Billy commands and directions. JanCarlo can have a hard time communicating with kids his own age, but we don’t have to worry about that with Billy – the two of them understand each other perfectly. They have a very unique and special connection. He shows the other kids at school pictures and videos of Billy, and it makes him feel very important. He looks forward to each session. Even when we are on vacation, JanCarlo asks if he can go see Billy!
Many children who have JanCarlo’s condition are unable to walk or talk, but thanks to his therapy sessions with Billy, JanCarlo is much better off. Excitement can trigger his seizures, so sadly, we’ve had to call ambulances in the park when he got too excited. He can’t even participate in recess at his school – he has to stay inside and play cards while the other kids play on the swings and slides. That’s what is so wonderful about his sessions with Billy – he doesn’t have to worry about overexcitement, since he is already in the hospital surrounded by wonderful care. He is free to be a regular kid, playing with his favorite dog. Canine therapy has truly changed his life for the better, and watching him smiling and enjoying life like a regular kid during his sessions with Billy is extraordinarily gratifying for me too.
Although there is no cure for JanCarlo today, we are always looking for the best ways to care for him. We are so glad to have found a group of people at Advocate Children’s Hospital who care so deeply about JanCarlo’s care. This includes the amazing doctors and therapists, but it extends to wonderful Canine Therapy Corps volunteers who donate their time to help him and other children at the hospital. We are so glad that Advocate Children’s Hospital brought Billy into his life, and that they are always willing to try new and different treatments, like canine therapy, that have helped him improve.
Thank you for supporting Canine Therapy Corps so that patients like JanCarlo can benefit from the transformative power of canine therapy!