Diagnosed With West Syndrome
It was frightening but thrilling
to achieve something I didn’t
think I’d have the nerve to do
Siobhan has recently done a skydive for Epilepsy Research UK, in honour of her daughter Olivia who has West syndrome.
Our beautiful baby girl, Olivia, was born in July 2011. Our eldest daughter Phoebe (who was approaching her 2nd birthday the following month) was very excited to become a big sister, and it was an amazing time to share together as a young family.
But our happy life was turned upside down when, at only 10 weeks old, Olivia started to have daily seizures. We felt shocked, devastated and utterly helpless.
Many investigations have since taken place to achieve a diagnosis and subsequently numerous investigations have been ongoing to detect the cause; but this is yet to be found.
Olivia has a rare form of epilepsy, West Syndrome. It is very difficult to treat and despite continued medical intervention we are unsuccessful in stopping her seizures. As a result Olivia has significant global developmental delay.
Coming to terms with how epilepsy has affected Olivia and our family continues to take time and requires many processes leading to acceptance of a future that is so different to the one we visualised. But despite the anguish, we feel very blessed to have our two beautiful daughters and we have a positive perspective; especially when we have the joy of seeing our daughters sharing moments together and the love we have for each other.
There is a frustration that we feel so helpless at times. We ensure all opportunities are available for both our daughters irrespective of how varied their needs might be but regardless of how much we love them we can’t ‘fix’ this for Olivia and as a parent you want to be able to take any pain away from your child and protect them.
Doing a skydive to raise awareness and money for Epilepsy Research UK with Olivia as my focus became a positive, constructive and valuable thing to do. Through this I put effort into gathering support from not only our amazing family and friends but also the wider community that we are part of. The day nursery that Olivia attends: Playaway Nursery, held a ‘dress up’ fundraising day with all proceeds donated going to ERUK. Our eldest daughter’s school: Bilton Grange Primary in Harrogate, supported me by circulating a letter I had written about my skydive amongst the parents at the school. As a result I received donations and wonderful messages of support from people I do not know, who felt moved enough to contribute. Independently, the children in year 6 decided to get involved to raise funds for the cause by making loom bands and holding a sale after school, raising an incredible £150. The after school club: Bilton Grangers have not only contributed hugely to the overall effort by taking collecting tins to other after school clubs but have nominated Epilepsy Research UK as their ‘charity of the year’, and will be holding further fundraising activities through the year.
It has been an extremely moving experience as people’s generosity, thought and care became evident. It has made me feel well supported not solely in terms of fundraising but also as part of the wider community who have clearly been touched by the cause.
It enabled me to show how proud I am of Olivia and how much she is loved.
The thought of a skydive was terrifying as I’m not keen on heights but in order to feel able to fundraise and ask for donations from what I appreciated is hard earned money, I had to make it an extreme challenge!
The skydive turned out to be one of the best, most treasured memories of my life.
It was frightening but thrilling to achieve something I didn’t think I’d have the nerve to do.
Jumping out of the plane and falling into the clouds was magic, and the amazing view of land and coastline to reveal itself as I fell below the clouds was incredible.
I was delighted to raise £3,242.62 for Epilepsy Research UK, and I would urge anyone to do a skydive for such a worthy cause because research is the only way to improve the lives of those diagnosed with epilepsy.
At a reception held on May 20th at the Royal Society to launch National Epilepsy Week, we announced grant funding of over £1 million across ten research projects all over the UK.
What an amazing day Team ERUK had at the 2019 London Marathon. 14 amazing runners taking on this iconic challenge for Epilepsy Research UK and a fantastic cheering squad
Do something amazing today and make a donation. Your money will go to support the pioneering research projects which help and support people with epilepsy