Toni-Ann & Kelly-Jane - A Mother’s story of Epilepsy
Meet mother & daughter duo Toni-Ann and Kelly-Jane. Kelly-Jane has idiopathic generalized epilepsy. Read Toni-Ann's story of epilepsy as a mother.
Toni-Ann & Kelly-Jane
Hi, I’m Toni-Ann, from Illinois. I care for my 32-year-old daughter Kelly-Jane, who has idiopathic generalized epilepsy, and has experienced seizures since she was 3.5 years old. Kelly-Jane is a princess! She loves to dine out, play games and travel the world. We do everything together, and we live life to the full.
I am blessed to be able to have Kelly work with me; she delivers the mail and chats to everyone in the Office, it’s great to have her around.
Their experience with epilepsy
For several years, I was on a constant search for a cause, I was always tracking and tracing every seizure and trigger. Unfortunately, we were never able to find this. One day, I woke up and said:
“I want to stop being her researcher, and I just want to be her mother”
How has Epsy helped you manage Kelly-Jane’s epilepsy?
I like to keep records of everything and I work full time - there used to be papers with notes on all over the place and it was difficult to keep track - then my doctor recommended Epsy.
I love Epsy as it’s an easy-to-use app which allows me to track patterns in Kelly-Jane’s condition; we can see the good and bad days, allowing us to make decisions on what might be best to do each day and to plan ahead. Even after Kelly-Jane has had a seizure in the night, she asks me if I have logged it! It’s motivating her as well. I’m developing more and more knowledge over time as a result of logging, and slowly discovering new features.
Perceptions of epilepsy
In our experience, we have seen improvements to the way people view epilepsy. In the past, we have had some nasty experiences; name-calling, even people videoing seizures. People will get nervous around Kelly-Jane when she does have a seizure, people don’t know how to handle the situation.
I still worry about discrimination against Kelly-Jane, although I feel people’s reaction comes from a place of concern. I try to reassure people that she will recover and if they want to help just to make sure that while she is in the seizure and during recovery, she is not in a position where she might accidently hurt herself.
Toni-Ann’s message to those with epilepsy
We all carry something in our lives we have to deal with, you just work out how to deal with it and live life to the full. Some days are bad, some are good, we just continue to soldier on.
Be gentle with yourself, you won’t get it right every time! Do what gives you peace and allows you to have a good relationship. It is so important to find yourself a great doctor who wants to work with you and discuss solutions. If you have just begun using Epsy, take time to make it work for your needs, customise your experience to make sure it works best for you!
*Thanks so much to Toni-Ann and Kelly-Jane for sharing your story. Epsy is on a mission to give the world a better way to live with epilepsy.*