Tell us about your relationship with Clara and how that changed over the years.
When asked about my sister, her epilepsy was never something that popped into my mind. Clara was so many things, but being defined by her health was never something she wanted to be and never was. She was adventurous, brave, kind and one of the most generous people I will ever know. I am not going to lie and say that her epilepsy did not affect Clara and the people around her, because it did. However, she didn't let it take away our ability to travel the world, have fun and take every little bit of what life has to offer. I wouldn't say my relationship with Clara changed in a different way to how other siblings change as they grow up, although my understanding of epilepsy definitely did.
When did you first hear about Clara’s epilepsy diagnosis and how did it make you feel?
I was four years old when Clara was diagnosed. She was eight and our middle sister Amy was six. Clara having epilepsy very quickly turned into something that we were just growing up with. It became a normal part of our routine. I don’t remember living without it. When I was little, I remember treating Clara's seizures like she had had a very bad dream.
When Clara was twelve her seizures worsened to a point where she was hospitalised as she was having around 50 a day. Although I was still very young, I quickly realised that the seizures no longer played a harmless part in our family lives. At that point, they became very scary very fast. My mum was living in hospital with Clara an hour away, while my dad juggled looking after Amy and me while keeping their business afloat. Amy and I grew up very quickly during this time.
Clara wanted to tell us her story about her life living with epilepsy, but unfortunately, she died before she had the chance. What do you think she would have told us?
When Clara got older, she did as much as she could to support people who were going through the same thing as her. Clara wanted to share her experience of living with epilepsy to the world, as she knew how important it was that people didn't feel alone. Clara spoke very openly about her experiences. She spoke about the constant worry of what she would do if she felt a seizure coming while on the tube or walking down the street. She spoke about her constant battle with the medication she was taking at the time, or the feeling that the drugs were making her depressed while not knowing if they were working or not. Also, she spoke about the concern she felt for our entire family knowing how much we worried.
Clara was interviewed not that long ago. When speaking about her experience in hospital when she was twelve, she talked about how, after trying drug after drug, doctors decided to put Clara on immunoglobulin (a blood product derived from specialist white blood cells). Her seizures dramatically dropped to the point where she spent eight years seizure-free. Clara said this was a ‘Miracle’ - after leaving hospital, she was suddenly now just a normal girl who wanted to squeeze everything out of life, and she definitely did that. Her sense of humour and fun defined her more than her illness ever did.
Although she understood there were down days, Clara always wanted people to know that epilepsy, or any illness for that matter, doesn't need to define you, or diminish your hopes and dreams.
Can you tell us your story about the Madrid Marathon and what it meant to you to run it and raise so much money for the Epilepsy Research Institute in Clara’s memory?
Four days before she died, I created a Just Giving page with Clara and our sister Amy. I was planning to take on the Madrid Marathon to raise money for Epilepsy Research Institute UK. Months before Clara died, she had been told that the next drug she would be prescribed had a 90% chance of making her feel awful and a 10 % chance of doing anything helpful. I wanted to raise money to change these statistics.
Clara was in Zimbabwe leading gap year students around Africa as we were putting together the Just Giving page. Her death came as a complete shock to everyone. A SUDEP (Sudden Unexpected Death in Epilepsy) was something I personally had never thought about. Clara's sheer enthusiasm for life dampened most of my worries, which is something I am still so grateful to her for.
Losing someone when you don't expect it is a very different form of grief in my opinion. I truly couldn't believe it for months and sometimes I still can't. Being able to push some of my grief into training was extremely difficult, but also gave me the most drive to complete something I had ever had. Channelling my grief towards a goal helped me massively. The support I had from not only my friends and family, but also the team at Epilepsy Research Institute was endless and that is something I will always be grateful for. I was now both raising money in memory of Clara, but also majorly for people who had gone through and are going through similar situations.
What would your message be to other people with family members living with epilepsy?
Obviously, having someone in your life who suffers from such an awful disease is terrifying. However, one of the things I am forever grateful for is that my family and I didn't try to stop Clara from going on her continuous adventures in life. Even though she was dealing with so much, she was still able to go out and do things that made her happy. Something I have held onto after Clara's death is the realisation that she did live her life to the full. She wasn't forced to stay put and be looked after day and night. She had the freedom to make memories and live the most incredible 24 years. Although Clara obviously had times when epilepsy terrified her, she was so grateful for the time that she had.
What advice would you give to someone thinking of taking on a challenge event to raise money for the Epilepsy Research Institute?
Taking on a challenge to raise money for a very special charity will always be something that comes with very mixed emotions. I don't have much advice, but I know for sure that being able to raise money, knowing you are making a difference is a special feeling and one that will not leave you.
