19 February 2019

UKFast Community and education Awards - Gail with Amelia Carroll who was diagnosed with Battens Disease.

At the UKFast Community and Education Awards – Gail with Amelia Carroll and her dad Mike.

Sometimes meeting someone stops you in your tracks. Sometimes, you come across a person who shakes you to your very core.

A few years ago, we were about to launch one of the biggest charity campaigns we’d done to date. Hosting Key 103’s Superhero Day launch, we were so proud to be the main sponsor of the campaign. It was an emotional moment for us, then Lucy Carroll took to the stage.

Lucy shared the story of her son, Ollie. Ollie was a happy, healthy little boy. Forever playing football and charming everyone he met with his token cheeky grin. At four years old, that changed. Ollie was diagnosed with Battens Disease, an incurable, terminal condition with a life expectancy of between six and 12 years.

Battens Disease prevents children with the condition from making the enzyme that’s responsible for eliminating waste that builds up in the brain. It leads to worsening seizures, as well as progressive loss of sight and motor skills. In time, children with the disease become blind, tube fed, dependent upon others and unable to communicate.

So began the family’s journey to ensuring that Ollie had the very best care he could.

Shortly after, they learned of the 25% chance that their two-year-old daughter Amelia would have the same condition. Tests confirmed Amelia also has Battens Disease.

I honestly cannot begin to imagine how anyone deals with the news that their child will never grow up, to have to watch them deteriorate before their eyes. Learning Amelia has the same condition must have been a hammer blow.

Lucy and the Carrolls reached a crossroads – fall apart, or kick into gear.

Taking action

The family began researching and seeking support anywhere they could. The biggest problem they faced was that the condition is so rare, even some of the doctors they came across had never treated children with it. Lucy recalls having to tell the doctors how to treat their children, having done so much research and living with Battens day in, day out.

At the event, hearing their story, Gail and I knew we had to help. On the spot, I donated £10,000 to the Superhero Day charity. I believe that we cross paths with people for a reason; meeting the Carrolls that day, we started a friendship.

Amelia received the Young Bravery Award at the first UKFast Community and Education Awards, for taking part in the Great Manchester Run, tackling 1.5km! She was earlier told that ‘if she were to reach five years old’ she wouldn’t be able to talk. She’s defying all of the odds.

Our director of CSR knows the family well and we’ve continued to support them since that day. In that time, Ollie and Amelia were granted compassionate use of enzyme replacement therapy at Great Ormond Street Hospital. Ollie and Amelia must travel down to London from Manchester every two weeks for the four-hour infusion into their brains. The therapy isn’t a cure, but it does give them the gift of time.

Today, I write of the family’s story to share of yet another incredible example of human strength and resilience. Ollie and Amelia’s older brothers, Danny and Micky, have come together to launch an event to raise money for their brother and sister.

This extraordinary family continue to amaze and inspire me.

The film team at UKFast helped to produce this film to promote the brothers’ event. Take a look and help in any way you can – whether that’s through sharing the post or going along to the event.

Thank you.

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