STARS Patient Information

Bekah's Story

Our daughter Rebekah is a healthy and happy 5 years old. She loves being outside and is happiest when "on an adventure" with her family in muddy woods! I can't quite explain how adventurous and active Bekah is - she loves swimming and climbing in particular so we're trying the climbing wall now! She is also very artistic and loves to draw and read for hours.

When Bekah was two, she fell off a concrete step and bumped her head. She then had her first seizure, much to Mum's horror. We assumed she had just fainted, as we had heard this was common, however we now know it was a reflex anoxic seizure - a condition whereby Bekah's heart stops beating temporarily, her muscles lock, eyes roll back and complexion turns ghostly white. It's a horrible experience for her and for us. Not knowing this, we continued to experience times (maybe 1-2 a year) where Bekah would hurt herself and the seizures would reoccur. We were desperate to wrap her up in cotton wool and had no idea what was happening. All of a sudden things like riding bikes, going on scooters and learning to climb (all things Bekah loves!) filled us with anxiety, which we tried not to show so that she might keep her adventurous spirit.

It wasn't until Bekah fell whilst 'on an adventure' in front of a doctor relative who witnessed one of the seizures firsthand, that we realised it wasn't merely a 'faint' as so many well-meaning people had suggested. We met with a Paediatrician who confirmed that Bekah experiences RAS. He then gave us a booklet of information produced by STARS - the charity I'm hoping to raise money for. This booklet alleviated out fears instantly, as it perfectly described our daughter's condition. It described our emotions and answered key questions such as is RAS life threatening? (We were incredibly relieved to know it wasn't!) I visited the website which had a testimony from families and individuals who experience RAS, and it was comforting to read each one. I then emailed STARS, who got back quickly with a personal message which made me cry in my lunch hour. We hadn't really realised before how much we had needed to hear from someone who understood our fears for our daughter.

Thanks to STARS, we're now much more able to deal with Bekah's seizures when they happen. Thanks to them, we're in the process of writing a plan which can be handed into her school and any clubs she attends. We can't speak highly enough of their services and help and hope that our story helps others experiencing the effects of this little-known condition. Bekah's dad is taking part in the half marathon to help raise awareness and funds for STARS. If you would like to help Andrew reach his target of £300, please follow the link to his Just Giving page -

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+44 (0) 1789 867


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