SUDEP Action

Making every epilepsy death count
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Bea only ever had four seizures in the past. One in September 2017, which after many tests was given the all clear from and assumed as a ‘one off nocturnal’. Then three in March 2019, all in the early hours of the morning, after which she was diagnosed with epilepsy and prescribed medication, with a review date with a consultant for six months after.

All her seizures had been at home with us where she lived, apart from one, when she was staying at a hotel. She did speak with our practice Doctor about purchasing a bed monitor, which we were looking at the best option to purchase.

Tragically and unexpectedly, our daughter passed away at home the morning of 10th July 2019, aged 18, during a seizure. The day before she had been at a picnic with her friends, had come home asking if we could move to Devon as a family. She had felt cold, which was unusual as Bea was always a warm child.

There were no other signs to alert us of what was about to happen.

My husband and I attended appointments with her, and at no point was there any warning that there was a potential to die during a seizure. Medical teams need to ensure patients are being given full information about their diagnosis, that their families are aware of the dangers, and that patients are encouraged to tell their friends what to look out for and when to call for help. First Aid training should be offered to the parents/family/carers of patients diagnosed with seizures. Equipment such as monitors, and alarms should be offered to patients, as one part a care plan to reduce risks. Advice should be given as to the best equipment to purchase, funding should be discussed with patients.

Bea gave birth to a beautiful daughter, Gracie-Mai Matthews, in December 2018, who remains living with us, and her Great-Grandparents as requested in Bea’s will. In the short time since she has passed, our daughter has missed so much of seeing Gracie grow and change, and everyone comments on how much she looks like her Mummy, she truly is a mini-Bea.

Bea was bright, funny, lit up a room with her smile, and gave the best cuddles. She loved to spend time with her family, horse ride which helped her to relax, play the piano with me, go to the cinema, and have meals out. When Bea passed away, she had just finished her first year of A level Photography and was due to go back to college in September to continue with this course. Then, she would take up a BTEC in Psychology, while looking after Gracie. This showed true determination.

As her mother, I have been through every emotion possible. I have felt numb, angry, disbelief, complete loss and hopelessness, and continue to feel these. I talk to her, she never leaves me, and I tell Gracie about her all the time. Our support network has been family and friends - you really do find out who your friends are when something like this happens.

We miss seeing and hearing her every day, telling each other about our days at the dinner table, planning dates in the diary together, singing in the car at the tops of our voices. The list is endless. I miss not being able to tell her I love her unconditionally, and how proud I am of her. Now, we continue for her daughter.

We had booked a family holiday to Devon before Bea passed away, and after much thought, all agreed we should still go, she would have wanted us to. We scattered some of her ashes down where she used to surf on a beautiful evening and intend on visiting as often as we can. We are now planning to scatter the rest of her ashes, next month, near to home where we can visit regularly.

We are fundraising in Bea’s memory, trying to create as much awareness as we can around Epilepsy, as well as planning dates for family time - our first Christmas without her, Gracie’s 1st birthday, Bea’s 19th birthday, Gracie’s naming ceremony (which Bea was planning) - all firsts which we are going to do together as a family.

Alexandra (Bea’s mother)


We understand that this My Story (and any of our other My Story articles) can stir up some memories and emotions of your own experiences.

If you need to talk, please do contact our Support team. Its free and confidential.

[email protected] or 01235 772852.


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