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Doctors said brave Ollie wouldn't live into his teens but today he celebrates his 13th birthday

Daily Express

|

January 13, 2024

A BOY who captured Prince Harry's heart after doctors said he wouldn't reach his teens is celebrating his 13th birthday today.

- JULIA ETHERINGTON

Doctors said brave Ollie wouldn't live into his teens but today he celebrates his 13th birthday

Ollie Carroll and his 10-year-old sister Amelia are among 30 children in the UK living with Late Infantile Batten Disease a fatal neuro-degenerative disorder that robs them of their ability to walk, talk and see, and causes seizures and dementia.

When Ollie was diagnosed with Batten Disease type CLN2 in February 2015, doctors told his parents Lucy, 38, and Mike, 39, that his life expectancy was between six and 12 years.

But today he celebrates becoming a teenager with his brothers Danny, 16, and Micky, 15, and sisters Renesmee, four, and Amelia on a family break at Center Parcs.

Ollie's image was beamed around the world when he met Harry_at the Wellchild Awards in 2016. The royal later visited Ollie and Amelia at Great Ormond Street Hospital.

Lucy recalls: "We were told it would be highly unlikely we would see Ollie's 12th birthday.

"The words out of the doctor's mouth were, 'Your son won't live to see his teens'. Yet here we are, preparing to have another teenager in our house. With this, however, comes our reality of knowing we really are on borrowed time. No one can tell us what happens next or what we should do as parents... that is a hard reality to live with.

"We are hoping that a few days away will allow us to make some special memories whilst giving us some space." When the family return home to Cheshire they face a fight to continue getting the enzyme therapy medication that Ollie and Amelia receive through a brain infusion every fortnight. If funding ends, the couple would find it impossible to raise the £500,000 needed every year (£250,000 for each child).

Smiles

They have battled for most of Ollie and Amelia's lives to give them the best chance against the devastatingly progressive nature of Batten Disease.

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