No Matter What Life Throws Your Way … Raising Epilepsy Awareness
Editor’s Note: Ryan Otchis, age 3, was diagnosed with epilepsy as an infant. We thought Ryan and his story deserved some additional publicity, since we especially love finding recipients who are also named “Ryan.” Since November is Epilepsy Awareness month, it is our pleasure to share some of Ryan’s journey with our readers.
Ryan’s first Christmas wasn’t the kind of holiday his family had hoped to celebrate. During a trip to California for the holidays, Ryan suffered his first seizure–one that lasted for more than 45 minutes despite the best efforts of emergency medical professionals. His worried parents spent Christmas Day with their 5-month-old infant in the Pediatric Intensive Care Unit.
Unfortunately, that seizure was the first of many more to come. “When Ryan was diagnosed months later after having even more seizures, I thought, ‘Great. Give us some medicine, he’ll take the pills and this nightmare will be over,’” recalls Ryan’s mother, Nina Otchis. But for the 3 million people in the U.S. who suffer from epilepsy, medication isn’t always the answer. Over thirty percent of sufferers are not able to medically manage their seizures and many more have only partial control. Seizure-related injury is a constant threat and epileptic seizures kill thousands of people every year. In fact, according to the Epilepsy Foundation, more people die annually from seizures than from breast cancer or automobile accidents. Those statistics are startling.
Given the catastrophic effect on society, families like the Otchises are concerned that we have not done enough to make people aware of causes, treatments, and first aid for epilepsy and seizures. That’s why they have spent countless hours trying to raise awareness in their own community. This is a disease that might someday affect you, your uncle, your next-door neighbor, your wife, or your child. It is currently not curable. If you are a sufferer, you may find a medication or combination of medications that allow you to lead a relatively normal life. However, a shockingly large percentage of patients may not find any relief. As a nation, we need to do more than we are currently doing to understand the dynamics of epilepsy and find a cure.
Ryan’s loving family does all they can to help him have a normal childhood. “He loves all things Star Wars,” says Nina. “The characters, the light sabers, everything.” But Ryan’s childhood has been anything but ordinary. Ryan has tried and failed a host of anti-epileptic medicines. His seizures have evolved to encompass new seizure types the family finds even more difficult to manage than his regular Generalized Tonic-Clonic (Grand Mal) seizures. He is now on a combination therapy plan centered on two medicines and several supplements. Ryan takes eight pills per day and an additional three doses of medicine that leave him tired and aggressive. Even with this regime, full seizure control eludes the family.
“Seizures can have varying triggers and the main issues for Ryan (besides illness) are over-tiredness and over-excitedness,” reports Nina. “Well, if you’re a child, that’s what your life’s all about!” Take Halloween or Christmas for example. How do you keep a 3-year-old from getting overly-excited on these special days? Even everyday events present dilemmas for the family. Attending children’s birthday parties are a risk. Ordinary childhood activities such as playing football on the front lawn, running down a hill, jumping in an inflatable bounce house and splashing in a play pool have all resulted in seizures for Ryan. Ryan has never been to the Playland at McDonalds. A visit to Chucky Cheese is out of the question. “We have to be cognizant of our environment and nearest source of emergency assistance at all times so we can balance the risks and be ready for any situation.” says Nina. “I’m not the Mom sipping a latte and gossiping on the park bench. I’m the Mom that is ON the play structure clutching a twin pack of emergency medicine in my backpack and hoping that Ryan does not have a seizure while at play. Our epileptologist said it best at the beginning of our journey: ‘Epilepsy truly affects the fabric of your family.’” We are very fortunate that our family bond is so strong.
Working together with friends and neighbors, the Otchis family have raised over $25,000 in two years to benefit epilepsy awareness and research. When asked what their motivation was for that kind of courage and effort, given the minute-to-minute burden of keeping Ryan safe, Nina responded with great emotion: “I think that as a parent you would do anything that you could…literally anything. If not you, then who? If our family didn’t do this, and if our friends didn’t do this, who would? It’s clear that for all its prevalence, epilepsy isn’t a high-profile cause. It doesn’t have corporate tie-ins or a famous celebrity spokesperson. Most people think it is a disease that can be easily controlled. It just doesn’t have that same level of awareness and mindshare even though its effects can be so devastating.”
The Otchis family can’t educate a nation alone, but they can increase awareness among friends and neighbors within their own circle of influence. Every head injury they help prevent by helping parents understand the importance of a bike helmet, every prejudice they eliminate by explaining the disease to others, every dollar they raise for research helps assure that Ryan and children like him will have a better future.
And what about the day-to-day battle? How does the family cope? Ryan’s father, Jeff says they manage by emulating little 3-year-old Ryan’s attitude. “He’s just always so happy,” says Jeff. Ryan’s recipe for inspiring hope seems to be: “Keep smiling no matter what life throws your way.”
Nina agrees. “I think a lot of it is, as with any kind of disease or personal setback that you are experiencing, attitude is half the battle…more than half the battle probably. Ryan just bounces back, even when he is partially paralyzed for a brief time after a seizure, or heavily drugged. He bounces right back and he’s ready to go and doesn’t let a lot slow him down.”
From her perspective, being a parent of a child who is facing a medical battle means learning to take life day by day. “There are going to be some good days and there are going to be some bad days. Don’t focus too terribly much on the road ahead. Enjoy every moment of your precious present.”
For more information about epilepsy and how you can help, visit www.cureepilepsy.org.