Epilepsy and Seizure star: Sue Byczo
Sue Byczo is our June 2018 epilepsy star. She was chosen because of her work with a safety product she created, the Help Belt. Funny story, we discovered Sue on Etsy, the arts and crafts website where she was offering her Help Belts. Read more below about this amazing woman and how she has met the challenge of epilepsy head on.
How did epilepsy come into your life?
Epilepsy came into our lives on the coat tails of Fragile X Syndrome. The estimates are about 30% of individuals with this chromosome disorder will develop epilepsy.
The first time I heard the word seizure was in 2001 when Adam, my son, was less than a year old. It was in the middle of the night and had no idea what was happening. It felt like he was shivering and I held him until it was over. It never once occurred to me that it was a seizure. I took him to the doctors the following morning and they said it was most likely a febrile seizure. I wasn't at all convinced because he hadn't been sick. I bet that sounds familiar.
In March of 2005 our lives were turned upside down. We had just moved into our new home that same month. I remember nothing about that day except for that horrible seizure. His father went in to check on him and found him in his crib having a seizure. It lasted about 45 minutes. It was our first introduction to the local emergency room, ambulance, and paramedics. Little did I know that this was just the beginning of what would be many 911 calls.
Tell us about the challenges you have faced along the way?
We have certainly had our share of challenges. At the end of 2005, when Adam was 4, I became a single mom. In some ways it was easier and in other ways it was harder. Either way it was Adam and I and together. We would face whatever came our way. I changed jobs to be better able to drop and run at the dreaded phone calls, "Adam is having a seizure". His seizures were intractable at this time and I spent every day and night in fear that I would find him seizing. Adam is mostly non-verbal and unable to convey how he feels. For me this compounded the fear and the guilt. The fear of the seizures and the guilt of not knowing how long he may have been seizing in his bed before I found him. I relied on a baby monitor to watch him while he slept. I woke up so many times during the night that it's a wonder how I ever functioned during the day. The setbacks because of the seizures were heart breaking. He had so many challenges to begin with and then the "S monster" as we call it took even more from him. One of the hardest for me was when he lost the ability to say that precious word "Mama". With every seizure I became super mom and then when I was alone I cried what felt like a million tears for my only child.
What strengths and talents have you relied on to face the challenge of epilepsy?
We are lucky to be living in a time of the World Wide Web. The internet has been my main tool in learning all things epilepsy. I have found great Neurologists, medications and support online. In some of my surfing I learned about how some dogs have the ability to sense seizures. After a lot of hard work, fundraising and waiting, Adam received his service dog "Kita" in 2008. Kita sleeps with Adam and is never far from him.
We have learned to laugh at all the silly things in life. Our sense of humor is a big strength. No matter what Adam and I go through we always find time to laugh. It has always amazed me how even after horrible seizures he will wake up and be in a good mood. He has taught me a lot about living in the moment and having a positive attitude regardless of the circumstance.
The biggest strength I have relied upon is my parents. My mom has been there with us through so many seizures, emergency room visits, neurology appointments, hospitalizations and EEG's. As I write this she is now driving with us to our 6-month neurology appointment two hours away. Back in 2009 we moved from Massachusetts to Tennessee with my parents. For them it was retirement. For us it was the opportunity for a new life. I didn't plan on living with them for very long. Funny how things work sometimes. Nine years later we are still living with them. It has had its ups and downs over the years but they are a wonderful help and support for both of us. I am so thankful for both of them. Being home has allowed me to be a full time, stay at home, mom. It also made it possible for me to take Adam out of school and teach him at home.
Are you involved in any activities that benefit those living with epilepsy?
Over the years I have developed close bonds with many parents like myself who have children with epilepsy. I have been able to provide contacts for people who have similar diagnosis such as Lenox Gastaut Syndrome (LGS) or Dravet's. I have talked with many parents who are new to epilepsy and hope that I have been a support to them. I believe one of the biggest comforting words are "I understand what you are going through". I have met many wonderful people on our journey with epilepsy.
Having to be the voice of my son for so long I have always had to take extra precautions in planning for emergencies. I would make up cards with all of his medical information and put them in his backpack or pin them to a car seat. One day I was thinking about what would happen if we were in a car accident. What if I was not able to explain his needs or where to find his medication list. I knew that there had to be a better way to convey this information in an emergency. I knew that I was not the only one to ever worry about a situation like that so over the next four to five months I put all the pieces together and invented the HELP Belt.
Tell us all about your Help Belts?
HELP Belts are my own invention. They are medical alert seat belt covers. They are a way to convey medical needs to first responders in the event of an emergency. They are made of a soft yet durable fabric that is wrapped around a seat belt and secured with 4 snaps. The HELP Belt is easy to install and remove on any seat belt so it can go where you do. The covers are printed with the medical emblem, a diagnosis such as "Individual with Epilepsy" and the instruction "Open for I.C.E". I.C.E. is an acronym for In Case Emergency. The inside of the HELP Belt has a pocket and a medical form that is completed to provide essential information for your care such as: emergency contacts, known allergies, prescriptions and more. I make them for many different medical conditions and I also make custom orders. HELP Belts are available at www.HELPbelts.com. Read more about how the Help Belt came to be by going here: http://www.epilepsygroup.com/notes6-35-197/safety-for-epilepsy-the-help-belt.htm
Do you work to raise epilepsy awareness? Are you connected in any way to the epilepsy community?
I have spent years spreading information about epilepsy and raising awareness for Epilepsy. I am always amazed at how many people have no idea how to help someone who is having a seizure. Additionally, most people are not aware that there are different types of seizures. I have taught many of my son's teachers, aids and therapists about the different types of seizures he has and how to recognize them. I went to the extent of filming one of his seizures to show them what to look for. I remember several years back I had a school nurse call me and tell me that Adam was in her office and he was shaking, drooling and staring off at something. Her next comment blew me away. She said she "couldn't get close enough to him to take his temperature"! Epic fail! That is why every day is another opportunity to raise awareness of epilepsy!
What are your plans for the future?
I have no idea what the future holds for us. I imagine it will be something that gives back to others for all the kindness we have been shown over the years. One thing I know is that today is the only day that matters so we will continue to love, laugh and enjoy each day as it comes.
