Epilepsy Stories Archive - The Voice For Epilepsy

Cassidy Megan Story

Kasam Parkar — Sun, 15 Feb 2026 13:13:20 +0000

Hi! My name is Cassidy Megan, & I am the founder of Purple Day.

I founded Purple Day in 2008 & I would like to give you a little bit of the history of why 🙂 .

When I found out I had epilepsy I was 7 years old in grade 1, I was so scared, embarrassed, and I felt so alone. I really thought I was the only kid with epilepsy. I also thought that I was the only one with epilepsy who felt this way. I didn’t want anyone to know I had epilepsy, and I wouldn’t let my parents or anyone talk about me having epilepsy.

When I was in grade 2, my mom had the Epilepsy Association of Nova Scotia (now called The Epilepsy Association of the Maritimes ‘EAM’) come to my school to do a presentation to my class to help them learn about epilepsy. I’ve seen how my friends were acting and really wanting to learn more. When they asked the presenter if she knew anyone with epilepsy, she told them “yes”. That is when I told my mom and teacher we could tell them I had epilepsy too. I was scared but I’ve seen how nice they were all being and wanting to learn more.

Then the next year, I’m in grade 3 and was sitting on the couch with my mom one day and I asked her why there wasn’t just one day for epilepsy like there was for cancer or St.Patrick’s Day. A day when people could learn more about epilepsy, so that people who have epilepsy would know that they weren’t alone and that people could learn more about epilepsy, and how to help someone if they were having a seizure.

I was originally diagnosed at the age of 7 with complex partial epilepsy and predisposed to tonic clonic. I had my first known tonic clonic in my sleep in 2015 and have a been having them since, mostly in my sleep as well as some myoclonic jerks.

In the summer of 2019, I spent 2 weeks in the hospital in the epilepsy monitoring unit because they couldn’t pinpoint how and where my seizures were coming from. After the tests there I was re-diagnosed with generalized epilepsy and photosensitive epilepsy.

I also have a couple other chronic health issues including a kidney disease and a connective tissue disease.

Even with my epilepsy and other health issues I do not let it stop me. I am a competitive archer and a professional model. I am also a full time student in collage and studying film. Epilepsy and my health is a part of me but it does not define me 🙂

My mom explained to me that the month of March was epilepsy awareness month in Canada and that there were different months in different parts of the world for epilepsy awareness. I told her I wanted to have just ONE day a year when we could have more awareness for epilepsy, a day that people could come together, and help each other.

I wanted to have a day when people with epilepsy would know that they weren’t alone and that they didn’t have to be afraid, embarrassed or feel like I did. I also wanted people who didn’t have epilepsy to learn more about it, to know that there are different types of seizures and how to help if they see someone having a seizure. I also wanted to let everyone know that even though people have epilepsy, we are the same as everyone else and that we aren’t different. That we have epilepsy just like someone may have blue or brown eyes, that our epilepsy does not define us.

My mom said ok, and asked me what I wanted to do. I told I wanted to get everyone to wear something purple and to tell people why, and to talk about epilepsy. She did explain to me that lavender was the (official) colour for epilepsy. I told her that lavender is just a shade of purple and by calling it Purple Day people could wear what ever shade of purple they wanted. I told her I wanted all my family and school and people around the WHOLE world to do this and my mom said “oh well lets just stick with our community for now”. 😀 But I never gave up and I never will, I wanted to make sure that people all over the world didn’t feel like I did and that they knew that they weren’t alone.

The reason it is on March 26th is that when we spoke to the principal at my school he said that the day that worked best for him and the school to do this and have The Epilepsy Association of Nova Scotia come down would be March 26th. Where I wanted to do this every year I wanted to have that day, March 26th as a world epilepsy awareness day forever and because it would be easier for people to remember an actual date instead of saying the 3rd Thursday every March or something like that.

We talked to my brother’s school, various friends and family, I emailed every politician in Canada, universities and asked them to join us, to wear Purple on March 26th and to spread the word, and they did. The Epilepsy Association of Nova Scotia (now called EAM) joined and became my Canadian global partner. In 2009, The Anita Kaufmann Foundation (AKF) joined us and became my USA global partner.

Since I started Purple Day in 2008 I have seen it grown and help so many and with the help of my global partners, The Epilepsy Association of the Maritimes and The Anita Kaufmann Foundation as well the many Purple Day ambassadors, Purple Day partners, businesses, schools, cities, towns, countries, other epilepsy agencies/groups etc from all over the world. Purple Day is now celebrated on every continent and in over 100 countries. In 2018 it was celebrated in outer space on the International Space Station and at NASA. In 2012 the Canadian Government passed the Purple Day Act, making it an official law in Canada, making March 26th Purple Day.

I have seen March 26th become a day that is celebrated by people with epilepsy and people without epilepsy all over the world. It has become a day when people learn more about epilepsy. A day when people with epilepsy don’t feel alone or afraid. It has become a day that all of us, from all over the world can call our own. A day for all of us to be proud and stand together. There are countries and people celebrating epilepsy and epilepsy awareness on March 26th every year on every continent in the world, and that’s including Antarctica! 🙂

Since I started Purple Day, I see more people talking about epilepsy, I see people from all over the world no matter how old they are, what race or religion they or where they are from, coming together as one to stand together and help each other grow braver in themselves and educating the world about epilepsy.

I hear stories from people who say that Purple Day has helped them speak out, be brave and feel a part of something for them. They feel like they have a day for them and epilepsy. I also hear stories of how Purple Day and all the awareness with it has helped people who do and who don’t have epilepsy learn more about it.

I also hear stories about the stigma and discrimination that people are still facing, stories about people with epilepsy dealing with anxiety and depression and I hear stories of people still afraid, still losing their jobs, their families and more. All of these epilepsy stories tell me that even though we have come so far there is still so much more work to do.

Epilepsy, epilepsy education, and awareness need to be talked about all the time, it is the only way we are going to change and erase the stigma and discrimination that comes with epilepsy.

Together we can and we will make a difference.

Sincerely,

Cassidy Megan

Founder of Purple Day

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Iris’s Story

Kasam Parkar — Thu, 28 Aug 2025 10:10:05 +0000

Hi my name is Wendy and as a Epilepsy patient too my Neurologist told me that having a child will be difficult and almost impossible. Before Iris we lose another baby, and I was heartbroken. I remember having this conversation with my husband and he just hugged me and told me something that I will never forget: “ don’t worry I have faith that you will be pregnant again before December “ It happened as a miracle ! Iris came to our lives in Christmas 2012 morning as a beautiful gift.

One year later she started having seizures plus another medical problems like Iris Coloboma in her eyes, she wasn’t able to walk because she used to have escoliosis in her spine. The Doctors didn’t gave us too much hope for her to walk but they wanted to try making the surgery to correct her spine just in case.

After recovering from the anesthesia she stood up on her feet for her first time ! We were amazed of how fast that happened. Even the Surgeon and Doctors were surprised too ! But one day her seizures went out of control and started having what doctors called Estatus Epilepticus that there were one after another…

In the hospital my husband without knowing he filmed a video of the medical team reanimating Iris because her vitals were going awfully down ( that’s the scene that appears in the musical video of Iris song ). But she survived! She have always been so strong…

Few years later she was diagnosed with Cerebral Palsy and Hidrocephalea. She started to go to Metro School where she received specialized therapy for her conditions. Iris loving personality won the hearts of teachers, therapists and the nurses. She loves to give hugs and kisses to them. One of her greatest accomplishments was to learn to walk by herself. Later she started learning how to say some words like : yes, no, mommy, daddy and I love you, not the best pronunciation but you can understand what’s she’s saying.

She received the gift for Disney World and the other parks from the Make a Wish program that one of Iris doctors help us to get it. She had so much fun that it was like a therapy for us all. Seeing her smile and laugh so much it was a blessing for us.

We’re very grateful for all that persons that took a little time to help Iris in one way or another through all this years. And we as parents will keep doing our best to help her and make her life happy. Again thank you all for your support and love 💜💜💜

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Kate Green’s Story

Kasam Parkar — Thu, 28 Aug 2025 10:10:20 +0000

My name is Kate and in my late forties, I was born with a rare genetic disorder called Hypomelanosis Ito Syndrome, known as incontinentia pigmenti achromians, is a rare disorder characterized by a whorled pattern of light patches on the skin. I associated it with issues between the eyes and the toes.

I have had various different types of epilepsy since I was born. I used to have Grand – Mal. I had a period in my life when I didn’t have any epilepsy at all from the age of 13 upto the age of 28, when it struck me again with consistent dizzy spells. The doctors prescribed me a course of medication, but unfortunately that didn’t work.

Over a period of time, thereafter, I suffered from “leg tremors” which would tire me out and did not know how long they would last for. Shockingly it only happened in one leg and this was in 2009 and that was only for 6 months then, it all stopped just like that.

On February 29th At the start of lockdown in 2020 I had dizzy spells for 3 weeks before I started having “drop attacks” on February 29th (as it was a leap year) I thought I may had tripped up over something but these drop attacks were getting more frequent and severe. I was told by my neurology team to log everything as soon as they happen. I have a brother and sister who don’t have epilepsy at all or any conditions.

Epilepsy has affected my family as much as it has me as my family have become so much in control over me I feel that I should stay inside to make them happy but not me. I’ve tried all the medicines I can and sadly no medicines work as of yet. I have lived on my own for 30 years and despite my family limitations placed on me I ignore them because I don’t believe in being born then being told to stay home because of my condition.

My epilepsy is called the “unannounced visitor” as it never signs the visitors book and leaves damages on me. Peoples perspective on epilepsy is “horrendous” as I’ve been told to stop throwing tantrums when actually I’m convulsing on the floor. Also the strangest thing is that I always land in the “recovery position” and on one particular side as well. Over the course of 5 years I’ve had 60 odd “drop attacks” whilst using crutches. I’m also a medic alert member so I have help on my wrist. I must say I’ve been pretty lucky that I’ve not broken a bone yet but my teams keep an eye on me.

I think that all medical places should display posters about what to do if someone does have ANY medical episode as people say there trained but actually during the course of me having seizures people have always been keen to feed me or ask me to drink water – not knowingly realise that I could or for that matter anyone could go into another episode and it be 10x times worse and they could end up thinking that they have done their best but actually the worst thing is that peoples intentions could be harmful then reassuring.

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A Mother’s Love: Fighting for Isabella’s Future

Kasam Parkar — Thu, 28 Aug 2025 10:10:47 +0000

Hello, my name is Johana, mom of Lia Isabella Mantilla and today I want to share our story with you.

Isabella was born on 07/05/2021, my pregnancy was very normal and calm, she was born at 39.5 weeks.

It all started fifteen days after her birth when she began to make strange movements in her body, folding her hands and feet in the shape of a knife and averting her eyes. For this reason, she was treated in the emergency room and after an electrocardiogram they discovered that Isa has infantile spasms, for people who do not know infantile spasms is a very rare type of devastatingly cruel epilepsy. She was admitted immediately as it is a drug resistant epilepsy and they had to start investigating by doing several tests to determine where the disease came from and thus be able to give the best treatment.

After an MRI they discovered that Isabella has a brain malformation which gave a neurological diagnosis of Epileptic Encephalopathy associating neurodevelopmental delay and Ohtahara syndrome. On her worst day, Isabella had more than 200 seizures a day.

With several days in the clinic and after a medical meeting, the doctors decided that the best thing for the girl was to operate on her immediately, doing epilepsy brain surgery and thus be able to remove the epileptogenic focus and be able to reduce or possibly freedom from seizures and be able to improve her condition. quality of life, since the life prognosis for Isabella was not favorable at all. At two months old on 09/06/2021 I handed my daughter over to a pediatric neurosurgery team in hopes of reducing her seizures. Sadly, Isabella failed the surgery and also the possibilities of freedom from seizures.

After the postoperative period, we realized that the seizures returned with more intensity. Isabella sat up at eleven months and crawled at two years old and has been making progress due to the therapies she has had since she was fifteen days old. My daughter has clung to life and every day we try harder to give her better quality of life and to be as independent as possible.

She has an 85% disability, she does not speak, she does not walk yet and the seizures continue every day. Isa’s diagnosis has no cure and due to the main diagnosis, other medical problems have been added such as They are hypotonia, microcephaly, autism, hyperopia and delay in global neurodevelopment and language delay.

Today I tell our story in order to be a testimony of life and also demonstrate that faith moves mountains. I also thank the people who have joined in in some way. to this beautiful cause also to make the invisible visible and to be able to reach many and raise awareness in order to be able to have more funds for more treatments for a cure because it is not just seizures, it is much more.

Today I want to ask for your support in order to be able to afford alternative and intensive therapies.

She was immensely grateful to the kind-hearted people who want to help us by sharing this. It will help me reach the right people and be able to find better treatments and thus improve my quality of life. Later I will tell you more about Lía Isabella. Thank you very much. mom who fights every day and is willing to do whatever it takes to see my daughter smile. ????

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Dear Anze

Kasam Parkar — Thu, 28 Aug 2025 10:11:01 +0000

What to say? How to describe you Anze?

I had the privilege of being your mum for 10890 days.

I am and will forever be grateful for having such a pure soul in my life. I learned so much from you Anze: what I should improve, what is best to let go, how to surrender and embrace whatever is coming my way.

Already when you were small, you were the sweetest child, who always wanted harmonious surroundings. If there were 10 cakes and 11 kids, you would give up your own slice so nobody would be sad. You were a very good observer and turned vivacious only when you felt at ease. Very private, yet kind, funny and always ready to help others.

At 17 you suffered 2 grand mal awakening seizures out of nowhere and were put on medication. For 5 years you were seizure free so your neurologist gave you the choice to try without medication. You looked at me for advice and in your eyes I saw hope. I let you decide. After 4 years your seizures returned, not many, just 2 per year, always early in the morning. You felt safe and were never concerned. You said you were lucky that your seizures were few and happened in a predictable and safe environment.

I don’t know if any of your many neurologists ever mentioned SUDEP to you. I knew about it and the last 3 years when medication no longer controlled your seizures after a 9 year seizure free period, I felt something might happen. I was concerned but knew I had to let you live a full life and make your own choices.

At 26 years of age you moved from Belgium to Scotland. You seemed to like your new life. You finished your studies of psychology, got a job, socialised and stepped into adult life. Not without some challenges.

Still, you remained the most responsible, brave and respectful person I have ever met. Never a bad thought about others. You loved listening to music and going to the gym. Those were the two worlds where your soul felt at ease and in harmony.

You died alone in Edinburgh and were found 2 days later when I became alarmed by no response to my calls. I knew you were gone several hours before receiving official confirmation.

I lit a candle and wrote my farewell to you:
“My greatest love, spread your wings and forget the obstacles of this world. Fly far into the sky, into the clouds. May your soul be embraced by the love you have always longed for. I am proud of you, proud of your achievements, of who you are and what you have given to this world. You are pure love and a joyful heart, a good soul and my greatest ally. You kept telling me «Mum please don’t worry, everything will be fine». And I won’t worry, because I promised you that. I will not try to keep you here or call you back into this world. I will do what every mother should, I will give you permission and my support to go, I will give you freedom and trust, because I know that you can make this journey on your own. I love you, my son, and because I love you so much, I wish and believe that you will find your destination and once you get there, you will laugh wholeheartedly. I won’t call you back and I won’t worry about you. Go peacefully my son, and do not look back. All will be fine my son. Xxx”

I never said goodbye to Anze’s body and finally embraced his ashes 3 weeks after his death. In Scotland I met wonderful, warm people who soothed my soul and helped me in those first days.

Anze was buried in his home town in Slovenia surrounded by family and those who knew him as a child. He was gently put to rest on the notes of bagpipes playing Amazing Grace in memory of his love for Scotland and his new chosen life.

You will always be loved and remembered my son.

Your mum

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Emilia Potts’s Story

Kasam Parkar — Thu, 28 Aug 2025 10:11:16 +0000

My life was changed when I turned 13 years old. I got diagnosed with JME, a type of epilepsy. We hadn’t noticed the early signs, but looking back now I see them clearly.

I experienced something called an ‘absent seizure’ which is where I would zone out, almost like falling asleep, but it could happen mid conversation, at anytime. I also kept waking up on the floor, something I never did, which was odd. This was a result of a seizure in the night and I rolled out of bed, again we didn’t suspect anything.

When I finally got diagnosed back in 2016 I experienced the most difficult 2 years of my life that have left a lasting impact. I was tackling GCSEs and seizures, I would have one with no warning, wake up, fall back asleep, throw up and feel dreadful for hours.

In 2019 I experienced my first seizure free year. And, touch wood, since then I’ve been ok. I still experience myclonic jerks which is what the ‘M’ stands for in my diagnosis. These jerks are mini seizures that may cause my leg to jerk and usually happen when I’m relaxed or on my period.

My diagnosis led to problems with my mental health which I still struggle with today. Sometimes I get bad anxiety about anything and paranoid and I’m hoping my story will help people, particularly children, who get diagnosed, that you can still be a child and enjoy life with epilepsy. It’s very important that children prioritise their mental health as well as their diagnosis.

Thank you for reading my story.

Emilia Potts

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Twins with Epilepsy

Kasam Parkar — Thu, 28 Aug 2025 10:11:28 +0000

Hi. Claire & Jane here. We are 32 years old and we share an unbreakable bond since birth, not only are we identical twins but we share the same condition. It took 20 years for us to be diagnosed with epilepsy. It’s been a long road to get to where we are today. Our diagnosis is frontal lobe nocturnal epilepsy which means we only suffer from seizures in our sleep. It’s quite rare and as we now know, can be very hard to diagnose!

It all began when we were babies. Our parents started to notice us making strange sounds during the night. We would babble and start crying hysterically.

They took us to see a paediatrician over several years and were told constantly that we were experiencing night terrors and we would grow out of them by the time we were teenagers. Back then, there was no video cameras on mobile phones and no easy access to a camcorder. By the time our parents came to our aid, the seizure had stopped.

The seizures continued and became worse as we reached adolescence. As time went on, we became more aware of the severity of our situation. We always had each other – in a strange way it’s comforting because nobody knew how we felt.

We had numerous tests done – EEGs, MRIs and countless blood tests, which all results have come back normal. When we were finally diagnosed, we were very reluctant to start taking medication.

Would they affect our way of life? Would they affect our relationships? Could we become pregnant in the future, and would it be safe? These were huge factors to consider, but after a lot of consideration, we knew taking medication to potentially control the seizures was the best option for us. As many people reading this will know, it was trial and error when it came to finding the most suitable one. After about a year, we found the right medication and haven’t had any major side effects since.

We’ve been well controlled now for about 6 years on the same medication. We do still have the odd breakthrough seizure from time to tome but we look on the bright said as we know that we aren’t drug resistant which we know can be so difficult for so many others living with epilepsy.

We now families of our own now and although it’s been a tough road to getting a diagnosis, we both live a normal life! Sometimes, it doesn’t feel real that we have a chronic incurable condition, but we like to think we wouldn’t be who we are today without it! Myself, Claire, I’m back learning to drive again! I can’t wait to get my independence back again. It’s very exciting and I’m hopeful that all will go well for me.

Twins with Epilepsy sharing their story

We wanted to share our story to help anyone who might be going through the diagnosis journey or have the same concerns that we had when we were starting medications – everyone’s journey is different and we hope that our story helps you on yours! We also want to appeal to everyone to learn about seizure first aid! Remember those three key words!

TIME the seizure, if the seizure is any longer than 5 minutes, you need to call an ambulance ⚠️

SAFE – keep the person safe, remove anything from around their head/neck, don’t put anything in their mouth, cushion their head

STAY – stay with the person until they come around, they will be very disoriented, confused, and exhausted. Place them in the recovery position when the seizure has stopped and let them know what has happed and that all is okay!

You could save somebody’s life!

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Jo’s Story

Kasam Parkar — Thu, 28 Aug 2025 10:11:43 +0000

At birth I had west syndrome and that lasted about 2 years. Because I had strokes, I had to teach myself through using heavy boots how to walk as all I could do before is crawl. My epilepsy when controlled I lived somewhat a normal life till I turned 13, I had the HPV vaccine at school which triggered my epilepsy. Had my first seizure at school! Hit my head on the lockers, went down and don’t know the rest.

I had tonic clonics purely at first. Then over the years I developed daily focal aware along side generalised seizures. Not a day off in 15 years. And if I did have a day off, my body would make sure I made up for it the next day. My triggers are sudden noise and movement, on top of the usual like sleep, stress and sometimes spontaneous seizures. I also developed focal clusters and prolong so taking buccal quite a few times a week. Loads of hospital stays including one last month which the cluster lasted over 4 hours.

Jo’s Story: Seizure-free days

My local gp told me “there are people worse off” and gave up so being that my seizures were so easily triggered I was able to film them and send them private – which, was difficult financially.

I managed to see a Dr in Birmingham and he told me about the Epilepsy Society and they changed my life. Offering me treatments and support I’d never had before. I am drug resistant so it started to look like surgery was my only option left. Last year Cenonabate was a new drug newly available which I started this march (due to long term illness last year I had to wait) and to our amazement I’ve had days off. In fact I just had a major milestone being 12 days free which sadly came to an end by a night seizure and cluster later that day????.

I’m hoping this only gets better! I have life long friends during my epilepsy journey and have been able to run marathons, attend patrons lunch, board meetings, become an advocate AND even attend the Parliament event with my friend Teni who also has epilepsy!

Jo @johardimann

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Allie’s Story

Kasam Parkar — Thu, 28 Aug 2025 10:11:56 +0000

I have drug resistant focal impaired. I was diagnosed when I was around 14, I am turning 20 soon and it still isn’t figured out. I have had an unsuccessful lobectomy and two SEEG’s.

Allie’s Story: My lobectomy.

I had a piece of my left temporal lobe removed in Jan/Feb of 2022. It unfortunately did not work. But, my experience in the hospital was amazing. After the surgery I was able to truly say. I had and survived a brain surgery. No matter how many times I think/say that it amazes me. I think you have to think positively about the surgery.

I’ve been having seizures since I was around 10, just had great difficulty with getting diagnosed. Multiple testing and different hospitals. Took a few years to get diagnosed. Currently, I have a good few days with no seizures, then will go a few days with multiple seizures a day. I occasionally have grand mal. Medication side effects hit me really hard.

Allie (age 19) @lifewithepilepsyy

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Caleb Mcarthy Story

Kasam Parkar — Mon, 29 Dec 2025 12:34:26 +0000

Caleb is an eight year old boy who suffers with so many seizures each day that doctors have said he is at high risk of SUDEP, his parents made a plea to help to prolong his life. He was a perfectly normal little boy living a very normal life until he began having seizures overnight on August 2,2019.

Caleb was invited to the US where he was diagnosed with focal cortical dysplasia – a type of epilepsy that occurs in the frontal lobe following an abnormality in the brain. According to medical experts it is the most common reason for drug-resistant epilepsy. Caleb remained in hospital in the US for three weeks while he underwent two operations to remove damaged brain tissue.

He needed to have further surgery so his parents started a go fund me and tried desperately to raise the funds that Caleb needed for his surgery.

Like a Christmas miracle on the 14th of December 2023 they reached their goal and Caleb is getting his surgery in January! There is still a long path to take for Caleb and his family but they are hopeful that this brain surgery will help Caleb!

Caleb_orion_2015 is the instagram handle for the account his parents run

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