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epilepsy heroes

As The Queen is Patron to Epilepsy Society, we are truly honoured to be part of this event and to celebrate, we wanted to give recognition to those whose life has been affected by the condition. Earlier this year, we ran a campaign to find five 'Epilepsy Heroes' sponsored by B P Collins LLP. Each hero along with a guest of their choice, would be able to attend this exclusive event. 

We asked our supporters to nominate their own epilepsy hero; whether they were living with epilepsy themselves, or if they were a friend, family member, health professional, or anyone who had gone that extra mile to help or to raise awareness. 

We were overwhelmed with the response for this campaign, and were incredibly impressed with each and every nomination that was received. It was truly encouraging to read about so many individuals who are working hard to spread awareness of epilepsy, are raising funds for the cause, are helping others with their condition, or have overcome major challenges in their own life. We want to say a huge thank you to everyone who submitted a nomination to the 'Epilepsy Heroes' campaign. 

It was an extremely tough decision, but after careful consideration from a judging panel, we were able to select five 'Epilepsy Heroes' who will be taking part in this iconic day. As The Patron's Lunch draws closer, we will be posting a short write-up about each of our 'epilepsy heroes' on this page to show the fantastic works they have done. 

B P Collins LLP is proudly sponsoring our Epilepsy Heroes campaign. 

 

Layla Reid, 11, Bristol. Layla (left) with her mum Sarah and sister

Layla was nominated as an epilepsy hero by her mum Sarah Reid, who has epilepsy and other disabilities. Sarah nominated Layla for her mature attitude towards the condition and helping others to understand it better. 

Layla wrote a book  'Epilepsy book for Kids' aged just seven with hand drawn illustrations of how epilepsy affects her mum. Since its publication, Layla hopes the book can be used in schools to enable teachers and children to understand epilepsy better. She received an award for the book and a letter from the Queen. Layla hopes she can personally thank the Queen for her letter!

"I'm very honoured to be nominated and really looking forward to the event. The whole experience will be amazing and very memorable," said Layla.

While helping her mum and raising awareness, Layla also fundraises for many different epilepsy charities plus Young Carers and Mothers for Mothers. She hopes to raise as much money as possible and spread awareness about epilepsy and also younger people caring for those with the condition. 

Layla's 'Epilepsy book for Kids' is available to purchase from our online store.

 

Chrissy Thomas, 56, Somerset.

Chrissy's story sounds like a Hollywood movie but is in fact a very real and inspirational story. Chrissy with her husband

Nominated by her daughter Becky, Chrissy experiences seizures regularly as a result of scarring on the brain,  meaning she can no longer drive or work. This doesn't stop her from giving her time tirelessly to fundraise and help others with epilepsy. 

On October 21 1991, Chrissy did not wake to get Becky or her younger brother ready for school. By mid morning, Becky's Dad had a feeling that something wasn't right so left work and returned home. He found Becky and her brother on the stairs, worried that 'Mummy won't wake up.' Chrissy had suffered what would be her first epileptic seizure and slipped into a coma.  Over the next six weeks Chrissy battled with encephalitis in intensive care and the prognosis was not hopeful. 

The decision was made to eventually turn off the life support machines as Chrissy would never walk or talk again. Becky's Dad began to say goodbye and played the first song they ever danced to, Dancing Queen by Abba.

Chrissy squeezed his hand.  Her first response in six weeks.

She came around from the coma shortly after and had to learn to walk, talk, read and write again. Chrissy's memory is still severely affected, she can no longer remember Becky or her bother being born or her wedding day.

Chrissy has raised thousands of pounds for a range of charities including Epilepsy Society. In 2015, Chrissy stayed at our specialist Sir William Gowers Centre. While staying there she decided to raise money for new furniture for the common room to make the centre more comfortable for the families and inpatients it supports. Chrissy continues to fundraise by organising lots of events , auctions, raffles, quiz nights and live band nights. The money she raises will not only go towards the centre but also much needed research that will benefit people with epilepsy in the future.

“I am absolutely overwhelmed that I have been selected as an Epilepsy Hero, and that I will be attending The Patron’s Lunch. I have had so much help myself from various people for my epilepsy, so I want to do as much as I can in any way possible to support others with epilepsy, whether it is through fundraising, spreading awareness, or campaigning.”  Chrissy.

"My brother and I want to thank her as a family for always being so strong and positive in her battle. As I hope you can imagine, she is a very special lady who deserves a truly special recognition." Becky Thomas on nominating her mum as an epilepsy hero.

Sam Downie, 41, Bristol.

Sam has refractory epilepsy and is currently pursuing the option of surgery in an aim to gain control of his seizures. Sam has not let his own epilepsy stop him from working hard to help others. Despite his condition, Sam offers support to people locally, helping to run the Bristol Epilepsy Social Support Group. Sam Downie

Sam is a patient of Helen Hodgson, North Bristol NHS trust. Helen nominated Sam as an epilepsy hero because:

"Sam has been a positive campaigner for highlighting the needs of people with epilepsy both locally and nationally for many years. He helps support people locally and helps me run the Bristol Epilepsy Social Support Group and much more.

I feel Sam very much deserves the recognition for all the hard work he does and being chosen to attend the patron’s lunch as an epilepsy hero is a fitting and wonderful way to show appreciation and thank him for the commitment he has shown to help improve the lives of people with epilepsy. "

Sam has also campaigned at a national level with the government and the department of health. He is involved in raising awareness of the condition by campaigning local clinical commissioning groups to stress the need for local investment in good quality services.

While supporting those affected by epilepsy in his local community, Sam is also involved with the Epilepsy Awareness Day & Expo at Disneyland Resort, California ( EADDL ) each year. The day brings together people with the condition, their families, friends and healthcare professionals. Sam shares the experiences via films and interviews he makes with people attending on the day.

A source of support and a listening ear for anyone affected by epilepsy, Sam has devoted his time to ensure that the condition is better understood and to improving the lives of people with epilepsy.

Sam: "Being nominated as a Epilepsy Hero, to attend the Queens Patrons Lunch is a fantastic opportunity for me to attend, not only as a person with lived experience of Epilepsy, but to represent Epilepsy Society, the great charity that has helped me, as well as others with the life-long neurological condition."

Caron Robinson, 53, Cambridgeshire. Caron (left) with her daughter Nickey

Caron and her family have worked tirelessly to raise thousands of pounds to help people with epilepsy and raise awareness of SUDEP (sudden death in epilepsy). Since the death of her daughter Nikey, who passed from SUDEP aged 23 in 2013, Caron has been campaigning to raise awareness of the risks surrounding SUDEP ever since. 

Her efforts enabled her to visit 10 Downing Street in 2014 where she was invited to attend a reception hosted by Samantha Cameron to ‘acknowledge the efforts of individual members who have gone above and beyond in memory of those they have lost to SUDEP’. 

Caron also runs a SUDEP awareness Facebook page which acts as a hub of support to others through their grief, sign posting people to research, support and professional advice and arranging events such as awareness walks. The group also welcomes people either with epilepsy or who are caring for a loved one with the condition so that they can learn about SUDEP risk and how it can be reduced.

The group now has over 1.1K members from around the world. Caron's Epilepsy Hero nomination has been supported by many friends whom she has helped through her Facebook page.

"Caron is an incredibly supportive person, who always goes the extra mile. She is my epilepsy hero because of the amazing support network she has provided so many grieving families and friends with." - Karen Pates. 

"Just knowing she and the other administrators of the site are there for us no matter what makes a huge difference in our lives. She is a hero to thousands of us who visit her site every day." Judy Paolucci.

"She deserves recognition for the fantastic work she does, all in her own spare time and around her employment. She is a legend." - Jaimi.

"I would love to support the nomination for Caron Robinson to be an Epilepsy Heroes as rather than taking herself away from it all, Caron chose to make as many people aware of the risk of SUDEP and use as mediums as possible to spread the word.  She is a kind lady with a big heart who makes the hardest of days bearable and lets you know you are not alone."  - Julia Kerr.

"Not a day goes by without Caron doing something to raise awareness or funds. She has boundless energy, unwavering commitment and the kindest heart."  - Rachel Sumaria.

"Her drive and commitment to further knowledge of epilepsy and SUDEP has been truly inspirational. She is a machine in her fundraising activities and always taking the opportunity to educate people of what living with epilepsy means. She deserves her activities to be recognised and applauded."-  Linda Joy

"I can’t think of anyone more fitting than Caron to be invited to attend the Queen’s birthday Patron’s Lunch. Caron will forever be an Epilepsy Hero not only to me but to all who have been bereaved by SUDEP." - Sandie Scrivens

Joanna Hardiman, 20, Dorset. Joanna wearing Epilepsy Society t-shirt

Joanna lives daily with the affects of epilepsy. She has a rare form of epilepsy which means that she has tonic clonic and focal seizures. 

 

Her soon to be brother in law Niall Theobald, nominated Joanna saying:  "Jo has overcome all of the stress associated with her condition and the difficult days to force herself to do something.  She refuses to be beaten down by the situations her epilepsy presents her with and is committed to working with her doctors and trying new medication."

 

Despite her condition, Joanna has a full time job as a support worker for people with disability and learning difficulties.  She loves her work and is able to easily understand the needs of those with difficulties due to her own. Joanna also undertook a 10km marathon last summer to raise money for Epilepsy Society, despite having a bad seizure on the morning of the race, she still completed the event. 

"Jo is a very brave young lady who doesn't let epilepsy rule her life. She should be an epilepsy hero because she is extremely brave, caring and willing to help others." Joy Harford.

"Joanna is a lovely young lady, who is caring and kind to everyone she knows both family and friends. She has battled with epilepsy since a baby with a strength and fortitude not found in many people ." Christine Richards.