Skye, 4 years
Cerebral palsy and epilepsy
Skye’s uncle Les and her dad Kevin tell us about her condition and how she inspired Les to take on the London Marathon for Sparks.
Diagnosis
“Skye is mine and Colleen’s first child and was born on Good Friday after a normal pregnancy. We knew that there was a serious problem with Skye because she was moving involuntarily when she was only a couple of days old. It was overwhelming, I remember being told a lot of lengthy words about her condition that we didn’t understand and she was soon diagnosed with both cerebral palsy and epilepsy” says Kevin.
Les adds, “I was devastated when I found out about Skye and was very apprehensive about what was going to happen to my niece. My twin Rob and I have a really good relationship with Kevin – we often call ourselves the triplets, and having a close family member go through such a traumatic experience was very difficult.”
“With Kevin and Colleen living in Ireland, we don’t get to see Skye as much as we would like but when we do see her, it’s refreshing to see how advanced she is becoming. Just some of the little things like lifting up her head or interacting with people through facial expressions are a real godsend” Les continues.
Living with the condition
“Our everyday lives are controlled by Skye’s condition apart from the time that she is at school, which she loves. The amount of emergency hospital appointments has stabilised a bit now but we do go to neurologists and breathing experts regularly. In a good year, we would be visiting hospital about ten times and on a bad year, about twenty times” says Kevin.
Les wants to help families 
like his brothers and has decided to run the London Marathon in support of Sparks. He explains why, “I wanted to do what I could to support people like Kevin, Colleen and Skye and so decided to run my first marathon for Sparks. The charity has a compelling story to tell about the research it funds to help children like Skye live with cerebral palsy. Training is tough but thinking about how strong she has been so far keeps me going.”
Help Les to raise money for Sparks and its research here: https://www.justgiving.com/Leslie-Worthington/
Kevin continues, “We have learnt to live day by day and to celebrate the happy little child Skye is, not who she could have been. I am very proud of my brother running the marathon with Skye written on his back. She’ll be there on his back pushing him along!”
How Sparks is helping
Children with dystonic cerebral palsy often experience whole body spasms and find their movements very difficult to control. A team at Bath Institute of Medical Engineering, led by Dr Tim Adlam, is designing a new type of seat for children with the condition aged 2 to 5 years old. Gently moving with them during spasms and normal movement, it is both supportive and comfortable.
A successful seat would allow young children to explore movement and develop control of their posture, supporting more normal child development. It would also help children communicate and participate in family or play-group activities.
Find out more about Sparks research projects into cerebral palsy and epilepsy.