Still Dancing through Life
The Hillier twins, Chloe and Lainey, along with their parents Paulette and David, came to EAC after both girls were first diagnosed with epilepsy at age 6 after Paulette noticed the girls having episodes of “staring off” into space. Having one child diagnosed with epilepsy is terrifying enough; but imagine having both of your children diagnosed within the span of a couple of months.
Paulette and David attended a few of our Parent’s Network meetings and soon became regulars coming to share their experiences and frustrations and learn from others. As the months and years went by, they turned into one of our incredible “veteran” families who would come to group to help give other parents and families support, hope and love and to share more than a few laughs. They continue to attend groups and the other families (new and the “veterans” alike) truly do appreciate their thoughts, advice and experiences.
The Hillier family became very active in all of EAC’s events and programs over the years – Chloe and Lainey were featured on one of our epilepsy awareness posters with the message of “We might stumble, but epilepsy won’t stop us from dancing through life!” Chloe, Lainey and their parents are purple ambassadors each year on March 26th, Purple Day and work hard to spread the word about epilepsy awareness. They get their family and friends, schools and workplaces involved in wearing purple and being advocates for epilepsy awareness. Their family attends EAC’s annual holiday parties and picnics and gets involved with other EAC events whenever they can.
There are really no words to justly describe this family – they have been through the epilepsy ringer over the years, with both girls having big up’s and even bigger downs; medication changes, medical diets, countless EEG’s and tests and a variety of treatments but they have stuck together as a family. They have sought out help and support when they needed it, and have never hesitated to give back that help when it was needed by another family. It is easy to see that they love each other deeply and that they would go to the ends of the earth for one another. Their laughter and smiles are contagious and you cannot help but love being around them. They are truly four magnetic personalities and it has been a pleasure getting to know them all over the years.
We asked Chloe and Lainey to give a short speech at our 2015 AGM and they wowed the crowd with their story, personalities and positive attitudes. Please give it a read and enjoy!
C: Hello my name is Chloe, and this is my twin sister Lainey. Today we will be talking about our life story of living with epilepsy. We were born 8 weeks early, and both weighed less than 4 pounds, but our mom nursed us into healthy babies.
L: In July 2008 we went on a family vacation to Toronto and attended a wedding of close friends. It was here that my mother started to notice strange moments when we would stare off into space. I was diagnosis with epilepsy 1 month later, and Chloe 3 months later.
C: At first our parents thought the epilepsy would not be that big of a problem. They were wrong, and needed help. My father found the Epilepsy Association of Calgary and the parent support group. And ever since we have been participating in a wide variety of events such as Purple Day and the Bare Naked Noggins head shave.
L: EAC asked if we would like to participate in their poster campaign to raise epilepsy awareness. We said YES! Our poster was hung in schools, hospitals and facilities around the city. Years later when we started at a new school we were approached by a student who recognized us from our poster. Today she is our biggest fan, and one of our best friends.
C: For our 10th birthday we decided to give back to the Alberta Children’s Hospital and requested that our friends make donations instead of giving us birthday gifts. We raised over three hundred dollars. It was our way of say thank-you to the Children’s for all of the help and excellent care we received.
L: Chloe and I have tried over 14 different types of medications, and the Ketogenic diet. I also received IVIG therapy. My sister would keep me company as the therapy could last up to 6 hours. We spent so much time at the Children’s they even knew who we were in the cafeteria.
C: My seizures were not responding to medications or diet. So I had to go into the hospital to have video EEG monitoring. I was there for 2 days. They had to superglue the leads to my head. After the two days my hair was menacing mess! It took a week to get my hair back to normal.
L: At the same time I also had to go to the hospital for video EEG monitoring. My mom stayed with me in the room for the whole time. My dad stayed with Chloe. It was the first time Chloe and I were separated from each other. To communicate we would talk to each other using our Nintendo DSi and Pixochat by sending funny pictures to each other.
C: We as a family have always enjoyed participating and spreading epilepsy awareness on Purple Day. Every year more friends and family join us in spreading awareness, and each year they send pictures of them wearing the colour purple proudly – in clothing, nail polish, scarves, headbands and jewelry.
L: Our first Halloween off of the Ketogenic diet meant we could eat CANDY! We were so excited. The years when we were on the diet our neighbours would fill our Halloween bags with toys, trinkets and gifts. If we did receive candy we would sell it to our father for a hefty price. He would share it with his co-workers, and we made money.
C: We are a strong family, but still needed support. The EAC was where our parents made friends, were able to talk about their fears, and gain an understanding of epilepsy. Michelle was always available to help problem solve and navigate the medical system whether to understand procedures or solve medication shortage issues.
L: In grade 5 I was experiencing 50 to 100 seizures a day. I also started to fall, and hit my head. My dad built me a special chair with arms for school, which would support me during a seizure so I would not fall onto the floor. He painted the bracket pink, my favourite colour. I believe the chair is still somewhere in the school.
C: After 5 years of continuous daily seizures they stopped. Finally we found a medication combination that worked for both of us. To celebrate we went on a family vacation to Cayman Islands.
L: Not that there is a benefit to having epilepsy, but one positive is the EAC Christmas party. Last year we turned our father (a normal civilized human) into a beautiful red and green Christmas tree with silver foil adorned mitts and a star. It is nice to be able to be with other families who also deal with epilepsy.
C: Thanks to Kids Up Front we are able to attend the theater and sport events. We have always been so thankful to Kids Up Front, and Michelle who get us the tickets. It is nice to be able to forget about epilepsy, and just have fun.
L: We love going to the theatre. Through Kids Up Front, our family has had the opportunity to go to many fantastic theater experiences and memories. After the play is finished many of the actors will pose for pictures and sign the playbills.
C: Camp Fireworks at Camp Horizon is our favourite EAC experience! Camp Fireworks was named because our mom explained our seizures as beautiful fireworks in our brains. This camp allows us to forget about our seizures and have fun. There are so many activities, and great food. Plus we get to see our friends and make new ones.
L: Our family has attended family camp at Camp Horizon. Each family group had to make a flag. Our flag was inspired by the lion’s determination, and our determination to never give up on our fight with Epilepsy.
C: In November of 2014 Lainey and I had to have another EEG. I can happily share with all of you that both of our EEG’s were clean, and they could not detect any seizure activity in our brains! We are currently weaning off of all medications and hope that after 7 years we have healed, and outgrown our seizures.
L: Without the support of the EAC our journey would have been far more difficult. We have made lifelong friends and are part of an amazing community. We cannot thank-you enough for everything you have done. This picture is a celebration of living life to the fullest, and sharing it with the people you love! Thank-you.
All of us at the Epilepsy Association of Calgary are extremely grateful to the Hillier Family for their incredible support of our association and events over the years but also for being such amazing ambassadors raising epilepsy awareness and for supporting others who are struggling. We are proud that you are a part of our family and have let us be a part of yours for so many years. You’ve taught us all to live, laugh and keep on dancing through life!