Jemma Dicken, 37, has been given this month’s Epilepsy Star award for her ‘caring nature’ towards her foster brother, Ty. She was nominated by her mum, Jill, who is a single foster parent and has been helped enormously by Jemma. Jill shares their story.
“As a foster parent, Ty came into our lives when he was five years old. He has uncontrolled drug-resistant epilepsy, which required frequent stays in hospital for prolonged seizures and visits to see the specialists. We very quickly had to learn how to best support Ty. Some of his seizures caused him to have falls which result in injuries. He’s also a young person who has additional educational needs and disabilities, so he requires constant supervision to keep him safe.
“Like for most people, Ty’s epilepsy journey has not been an easy one. He’s tried out several different drugs over the years, some having bad side effects and one which he had a bad reaction to. In 2016, specialists explained that Ty would struggle to achieve developmental and educational goals because of the affect epilepsy was having on his brain, and we should instead help him progress with his personal skills. But my daughter, Jemma, and I took this as a challenge to help him defy the odds he’d been given. My family as a whole has allowed Ty to progress at his own pace, slowly but surely, to achieve more than we ever imagined.
“After 10 years, Ty is finally in a better place with his seizures, going from an average of 25-30 a month over the last few years to 5-7 in the last three months. The commitment, patience and extra time has definitely paid off, as we’ve given him the space he needed to feel safe and develop at his own pace.
“In the early years, caring for Ty took up all my time. He was also diagnosed with ataxia and had problems with his feet, all of which added extra concerns for his safety. Both my daughters, Jemma and Jess, welcomed Ty into our lives, our hearts and our home. Jess now has two daughters, Emilia and Olivia, and Jemma has Maisie and Freddie. All three of my granddaughters have helped to support Ty over the years. I feel they have all learnt an understanding of seizures and his additional needs. This experience has definitely helped shape them to be caring, considerate and helpful young people, of which I’m very proud.
“As a whole family we have learnt to know the signs, and when to be a little more understanding and supportive of Ty when he’s having a bad seizure day. He might need a little extra help so we can continue to include him in family events and he doesn’t need to miss out. I’m very lucky to have so much support.
“Jemma originally was living with me when Ty came to live with us. She quickly learnt all there was to know about his seizures and how best to support him through online courses and information. His seizure journey was scary to witness but luckily Ty has no memory or idea he’s ever had seizures. Jemma has the ability to stay calm, monitor the time, and support him during and after the seizures, making sure he’s safe and comforted. His post-ictal phase can be prolonged, and he can present with stroke-like symptoms so plans may need to be changed at the drop of a hat.
“In 2019, Jemma became Ty’s short breaks carer. This made their bond even stronger and when Jemma got married and had her children, Ty felt relaxed and part of the family – all of which has helped in reducing his seizures as we can usually pinpoint them down to when he’s unsettled in his routine or emotions. He really looks forward to his sleepovers at Jemma’s and cheekily rates the stays out of 10 stars – she always gets 10 out of 10!
“Over the years, Jemma has taught her husband, James, and daughter, Maisie, how to support Ty with his ever-changing seizures. Maisie is very proud to help comfort him when he’s not himself after a seizure. She will sit with him and make sure he’s safe on the sofa and is very helpful at shouting ‘seizure!’ when one happens when her mom is out of the room. Jemma has taught Maisie there’s nothing to be scared of. She’s aware that toys need to be moved out of the way and he may need to be put in the recovery position after his seizure has finished. Maisie has inherited her mum’s ability to stay calm and be understanding of the effects a seizure can have.
“Jemma and Ty have such a strong bond. She’s so committed to supporting his progress, which helps him to live his best life, feeling valued and happy. When Jemma got married in 2020, she asked Ty if he would walk her down the aisle. This was such a proud day.
“I’m so grateful that Jemma’s caring nature doesn’t end with Ty. She wanted to raise money to help other children and teach Ty a valuable life lesson. In May, Jemma ran the London Landmarks half marathon. Running is not something she enjoys but she wanted to show Ty that when you put your mind to something and don’t give up, anything is possible. We couldn’t be there on the day due to Ty’s needs, so we made a banner with Ty on it for Maisie to hold so he felt part of the day.
“As a single foster parent who doesn’t drive, I am so grateful for the continued support and help Ty and I receive from Jemma. Everyday I get messages to check if I need anything, or just to check we’re okay. I could go on talking about all the things she does for me, but last year was the most important of all. I was unfortunately diagnosed with cancer and as hard as it was for Jemma to deal with, she immediately agreed to have Ty for four weeks while I recovered from an operation.
“She has a full-time job, a home, and two young children to look after but didn’t hesitate to take on Ty for the extra time until I felt well again. Luckily, she has an amazing, supportive husband who is equally as committed to supporting Ty. My daughter is amazing! So caring, thoughtful, and kind-hearted. I’m so proud of her and the way she has always gone above and beyond for Ty.”
Accepting the award, Jemma said:
“I didn’t know mom had nominated me, so it is very unexpected. I feel honoured to be recognised for something that comes naturally to me. My mom brought me up to help others who are in need. Mom has fostered other children too and I’ve always just wanted to try and help in any way that I can to make sure the children have a positive, enjoyable life.
“We created a safe space for Ty 10 years ago and I know without all the efforts, his life would be very different. I often remain calm in stressful situations, which means mom knows he’s always safe with me. She can switch off and get the much-deserved break she needs to continue the work she does.”