I sit writing this as we are on our way back from Leeds after a lovely day at the Epilepsy Action Awards. Sooooo it had been a VERY long week (both my parents are quite poorly) but with Noah having his first sleep over with Nanny& Grandad Chris & I were off to Leeds for the Epilepsy Action Awards. I have to apologise here to my Mother in Law for my untold texts! It has been the longest and furthest I have ever been from Noah! However I am pleased to say he didn’t raise an eyebrow and loved being with his Grandparents, we have the pictures to prove it (see below)! I however cried when I left him and missed him dreadfully.
As we headed up to Leeds I was feeling rotten with the epilepsy, we had had a busy few weeks which had been both stressful and tiring, big triggers for me and we were living with the consequences. Virgin Trains upon learning I had won the award very kindly upgraded us to First Class, it was appreciated and a lovely journey, the staff were all very friendly. The night before the awards myself, Chris, Alex and Alexs Mum headed out for dinner at Pintura in Leeds – the food was lovely. I then should have had a restful night but woke up twice thinking I should check on Noah! My body clock also then used to being up with Noah had me up at 7! So not quite the lay in I was expecting, Chris on the other hand snoozed happily.
We had a really nice welcome and I have to thank the Epilepsy Action staff for being very welcoming. I also really enjoyed meeting the other winners all of whom were just as passionate as I was. I enjoyed some interesting debates on the terminology for Epilepsy, Katie Hopkins as a representative of those with epilepsy (granted she can be controversial but I wish her well after her surgery to treat her Epilepsy) and a long chat about the information out there for women with epilepsy – I just hope I didn’t offend anyone! One of the best things was being able to pass on my details to others in the room, sharing my blog with them and hoping in turn they do the same.
So then it was down to the serious business of the awards. Epilepsy Action thanked us all for coming, people had come from all over the country. They started by saying they could not put a price on the work volunteers do. They give up their most precious commodity to help the charity and that is their time. Having said that they estimate that if they paid all of their volunteers for the work we do it would cost them 1 million pounds per year! That’s a hell of a lot but it is fantastic that so many people give to such a great cause so selfishly!
Firstly I have to say that the winners were all very worthy and I am humbled to have been in the same room and have heard the amazing work they have done. There were five categories and I will talk you through the winners.
Alex Gough: Up first was my Alex. Those of you that read this will know how special she is to the three of us (four if you include Patch who adores her!) Alex has raised almost £30,000 since her boyfriend died in 2011 following a seizure aged just 19. She has worked tirelessly to raise funds in Ollies memory, sky dived, music nights, climbed Ben Nevis and is taking on the London Marathon 2016. She has encouraged others to do the same, she is an inspiration. She too was just 19 when this tragedy happened and rather than curl up in a ball and give in to the grief she used a horrendous situation and found a positive. Her strength, determination, dedication and caring nature is to be greatly admired. She is always my winner and my hero and I am so pleased that Epilepsy Action recognised her work. I love you and am so proud of you.
Dylan Roberts Memorial Team: Llinos Williams and Carwyn Roberts are brother and sister, they both have epilepsy. Last year they volunteered to run a support group. The reason for doing so is very personal – in May 2007 their brother Dylan passed away from SUDEP (Sudden Unexpected Death in Epilepsy) Dylan was on medication and his seizures were not frequent, the family were not given information and they were told they could not die from epilepsy. All of this spurred them ibn to raise awareness. To date they have raised nearly £5000, the family say this has given them something positive to focus on. Despite their own situation both are determined to support others and ensure they are not left to struggle as they were.
Sikh Temple Walkers, Peterborough: Since 2003 members of the Sri Guru Singh Sabha Gurdwara Temple have taken part in an organised walk annually, the event usually raises about £2000. Over £26,000 has been raised since they began. Roger Stimson is the key organiser and he has worked with members of the temple to create interest and continuity. He has been a long standing supporter of Epilepsy Action.
Overcoming Personal Adversity
Hannah Burrows: Hannah developed epilepsy as a child. However Hannahs mother hid the condition and refused treatment for her daughter. Even Hannah did not know she had epilepsy and grew up thinking she was lazy, stupid and a day dreamer. One day Hannah had a tonic clonic seizure in-front of her father, as a result her mother could no longer hid the condition. Over the years Hannah tried every drug without success. After a long process which she herself initiated Hannah finally had a VNS treatment in February 2014. Hannah is now a different person with lots more confidence, she travels abroad alone and also speaks at conferences about her experiences. Seizures are still part of Hannah life but thankfully not as severe or frequent, nothing gets in Hannahs way is an inspiration to those living with uncontrolled epilepsy.
Promotion of Public Information and Awareness
Jon Barnes: Jon Barnes is an Accredited Volunteer. His interest in epilepsy began when his son Stevie was diagnosed with Epilepsy at the age of 13. Jon understands and has direct experience of the impact of epilepsy on the family of someone with the condition. Over the years Stevie has become less able to do things for himself as the epilepsy has got worse. This has meant Jon has had to give up work to care for him, Jon is often tired due to circumstances beyond his control yet his commitment and enthusiasm are unwavering. He has delivered many Epilepsy awareness sessions including to a number of Universities. Jons work has increased awareness of epilepsy in schools, workplaces and amongst the general public. The feedback from his talks is truly excellent.
Kasam Parkar: Kasam has been actively involved with Epilepsy Action over the last 12 months and during this time his activities have had a notable impact. As part of Epilepsy Actions seizure control campaign he shared his story of epilepsy and the ketogenic diet, in particular how it affected him during periods of fasting for Ramadan. He was also involved in organising fundraising and awareness activites for ‘Purple Day’ 2015. He has arranged for a number of Local Authority buildings to host displays. His enthusiasm and boundless energy have ensured his ideas have been realised. He is currently working on ‘Purple Day’ 2016! I had a long chat with Kasam and he was a really lovely man full of really positive ideas.
Me! I won! I am so touched and honoured that Epilepsy Action felt I was deserving of this award – especially hearing the stories of everybody else. They awarded me this award for the awareness my blog has raised and for being both a patient representative and campaigner. As I said at the awards I’d like to thank Epilepsy Action for their support not just with the blog but their support and guidance over the years. Awareness largely depends on people sharing information so I encourage as many of you as possible to please share the blog. I also have to thank Alex for her never ending patience in reading and supporting my blog. Chris for just being himself, this would not be possible without your unconditional love and support. Finally of course Noah for being my driving force, for making me so passionate about helping other women allowing them to achieve their dream of a family. This was particularly poignant as a member of Epilepsy Action staff shared with me a story about a 65 year old woman he met recently who said to him who said she has never had children because doctors told her she wasn’t allowed. This broke my heart and made me even more grateful (if that’s possible) for our beautiful baby boy. I look forward to working with Epilepsy Action to update their pregnancy section. I never started this blog with the aim of winning awards I just wanted to help people, and if I have helped just one person then I have done what I set out to. I am also immensely grateful for the recognition and touched by those who think I deserve it.
Self Help and Support to Others
Matthew Adams & Janet Mitchell: Janet and Matthew are mother and son, they have been involved with running the Wolverhampton branch for a number of years. Matthew has epilepsy and frequent seizures yet he is very active. Matthew Dad is very unwell and this added quite a great deal of stress and anxiety to the family which made Matthews seizure more frequent however they continue to support the branch fully. Janet handles enquiries from people seeking help and advice, she is able to share her considerable knowledge and steer people towards the appropriate professional support they need. In 2014 they started a new group in Cannock, they attracted good numbers and a younger demographic which is very positive. They are now working to set up a centre for young people affected by epilepsy in Wolverhampton.
Jayne Burton: Jayne is an outstanding volunteer and has been several years. She provides essential support for Epilepsy Action voluntary activity in the north of England. Jaynes activities have included setting up a coffee and chat group in Liverpool; on her own initiative, setting up support sessions for teenagers at transitions clinics at the Walton Centre. She supports volunteer recruitment and training in the North West and mentoring new accredited volunteers and helped to produce the Seize Control event in Manchester. She also played an important part in community fundraising in her area.
Epilepsy Action Branch of the Year 2015
Bury Port and Pembrey
The Bury Port and Pembrey Branch was established in 2009. It is a group for parents who have a child with epilepsy. They also welcome siblings (I would have loved something like this for my sister when she was growing up) and Grandparents. They used to meet in a church hall but because they grew so much they had to move to a riding school for disabled. Dragonfly Vision is a riding school that helps children and young people with learning or physical disabilities to gain confidence through riding horses. Whilst this takes place parents can have a cup of tea and gain support from each other. They are true ambassadors for how a support group can evolve, change and adapt to changing environment. They are a unique branch and most worthy of the recognition reflected in this award.
It was a truly inspirational day with humbling stories. Every single winner thoroughly deserved the award. Thank you Epilepsy Action for the warm welcome and support you give to us all. I am humbled by all the messages of support, shares on facebook, retweets on twitter I have received since winning, I have to tell you all that you have had me in tears with what you have said.
Awards to Focus Group
A phone call from Young Epilepsy has meant that the day after the awards I was off to a meeting with Young Epilepsy and River Island. It is to look at their joint campaign with Epilepsy Society ‘Everyone Knows Someone’. I am very much looking forward to helping shape this national campaign and will update you in the next blog.
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.