A ‘THRILLED’ mum has stepped up her campaign to raise awareness of the rare condition which leaves her three-year-old son vulnerable to seizures.
Cara Flitton launched her campaign Pathway to Progress to share the story of her son Ronnie, who suffers from Reflex Anoxic Seizures (RAS), and to connect with other families in the same position.
And she is celebrating the success of her first community event, a garden tea party which has raised hundreds for STARS and the OurJay Foundation – two charities which have helped Ronnie.
Cara – who lives with Ronnie, his five-year-old brother Jackson, and her partner Lewis – said it was a ‘completely unexpected and terrifying’ experience when Ronnie had his first episode while he was at nursery.
She said: “He suddenly went pale, limp, and lost consciousness – something no parent ever wants to hear. Watching your child go through something like that is heartbreaking. We were left feeling helpless and overwhelmed.
“Learning that he had RAS was a huge shock, and it’s something we’re still learning to live with every day.”
After he was diagnosed, STARS – the Syncope Trust And Reflex anoxic Seizures charity – helped the family understand what was happening to Ronnie and how to support him.
“We constantly have to be on alert and adapt our daily routines to try and avoid triggers and reduce risks,” Cara said. “It’s also meant educating those around us – friends, nursery staff, and extended family – so they know what to do if he has an episode.”
The family were contacted by Rugby woman Naomi Rees-Issitt from the OurJay Foundation – a charity she set up in memory of her son Jamie who died aged 18 – to provide them with a portable defibrillator.
“That gesture changed everything,” said Cara. “It gave us a huge sense of relief and took the edge off the constant anxiety we live with – just knowing we have it with us in case of an emergency.
“There was one incident where we came close to needing it during one of Ronnie’s episodes, but thankfully he came back around quickly. Just having it gives us peace of mind we didn’t have before.”
At the garden party last weekend, Cara and family raised £400 to be split between the two charities – and Cara hopes to keep raising awareness of the condition to help other families facing the same challenges.
She added: “Ronnie is such a brave little boy. He copes so well, even though he’s been through more than most his age.
“Ronnie is cheeky, curious, and full of life. He loves to laugh, dance, and explore the world around him. His spirit is so bright, and he has a real knack for bringing joy to everyone he meets.
“As a family, we’re doing our best to stay positive and proactive by raising awareness and connecting with others.
“Pathway To Progress is a small awareness page I set up in honour of Ronnie. It’s become a space to share our story, promote education, and create positive change through community, conversation, and charity events.
“We have had over 10 different families that have reached out to the page that have a child with RAS and we all been keeping in regular conversation about each others experience and support where needed.
“Fundraising has really helped us focus our energy in a positive way.”
Visit https://tinyurl.com/3tr7rmjw for more information on Pathway to Progress.
