Celebrating everyday epilepsy heroes.
Richard McGhee’s first seizure was a big one. On his way to the village shop with his son Jack, he suddenly fell to the floor, unconscious. He fractured his skull and broke his shoulder and his collarbone in the throes of his first seizure. For his eight-year-old son, it may well have been the scariest experience. But, in that moment, Jack showed a huge amount of bravery. He shouted for help and started to call the emergency services, before a passer-by came to his and his dad’s aid.
It is courage and strength of character like this which led to Jack winning an Epilepsy Action Helping Hands award this year. His dad nominated him, saying that day was a life-changer for both him and Jack.
“He is only eight years old and he dealt with all this in such a calm and grown-up way,” Richard said. “It makes me feel so proud and safe to be around him. He will always be my hero for his actions on that day.”
Jack is one of seven recipients of this award, given for showing outstanding support to people with epilepsy. Also receiving this award this year are two women who have worked tirelessly to campaign for recognition and overdue support for families with children born with foetal valproate syndrome.
Emma Murphy and Janet Williams are founders of the Independent Fetal Anti Convulsant Trust (IN-FACT). Both women have epilepsy and were prescribed sodium valproate for their conditions without being told of the risks in pregnancy. Emma and Janet both have children with foetal valproate syndrome.
Their work has been instrumental in bringing about awareness of the risks valproate carries if taken during pregnancy. They are also a key source of support for families affected by valproate. As an indication of the significant support they have provided to others in a similar situation, Emma and Janet were nominated by 12 other parents for the Helping Hands award.
One parent praised them, saying they have to manage their own epilepsy and the conditions of their children, and they still find time to support other families affected by foetal valproate syndrome. “I believe they are truly worthy of this award as true epilepsy heroes,” the parent added.
Janet said: “We are extremely touched to be nominated for this award by our families, and it means a great deal to us both having supportive parents onboard with the campaign and personally. Our work in Parliament has been demanding, a great commitment, but has been truly fulfilling, a huge journey and learning curve. We have every intention on continuing with the work we do to support every family affected by anti-convulsants in pregnancy.”
Emma added: “We are very grateful and proud to now be receiving this recognition from Epilepsy Action. It has been an arduous eight-year parliamentary campaign for IN-FACT alongside helping parents and families through our support group FACSA.”
Showing support can be as much about amplifying people’s voices as it can be about quietly being your family’s rock.
Paul Thirkettle is exactly that. He is no stranger to epilepsy, having been around the condition since he was 13 years old, when his mum, Melony, was diagnosed. Then, years later, when he met his wife Rachel, he found out that she had lived most of her life with epilepsy too. They now have two children – Dorothy, 12 and Georgie, 10 – and Georgie is also living with epilepsy, alongside some other medical conditions.
Rachel nominated Paul for a Helping Hands award, saying he is completely invaluable to his whole family. “He never moans about anything, it’s second nature to him. He records the dose of all our epilepsy medication and he comes to every hospital appointment, making note of what the doctor says to help us remember. Most importantly, Paul remains positive, encouraging us to do all that we can.”
All the recipients of this year’s Epilepsy Action Helping Hands awards have different and unique stories and experiences. But one thing they have in common is a huge amount of care and generosity for others living with epilepsy. You can read all of their stories in full below. Congratulations to all the winners, you are all brilliant!