Rare disease leaves Isle of Wight toddler fighting for life

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Welcomed warmly into their Newport home by parents Dan and Jess, adorable 22-month-old Teddy gave me a smile that melted me to my core.

Teddy smiles and plays just like any other happy little boy his age — and his parents smile with him, sharing every precious moment they can.

On January 24, Dan and Jess were dropped the bombshell Teddy has the extremely rare mitochondrial disease.

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Follow the 'Team Teddy' link to enter the dedicated JustGiving page

This is when cells in the blood that generate most of the chemical energy needed to power their biochemical reactions — to efficiently turn sugar and oxygen into energy — do not work properly.

Teddy is the only child in the UK known to have the condition.

There are various strands of the disease, but Teddy's is one of the rarest types, with, tragically, no known cure.

Toddler, Teddy Ward, with parents Jess and Dan. (Image: Jess and Dan Ward)

"From birth, Teddy was absolutely fine. But when he was about five months' old, Teddy started putting on lots of weight," said Jess, a primary school teacher.

"His head ballooned, with really deep set eyes. But, as we are first-time parents, we just thought we had a chubby baby and he was eating well."

But concerns developed when he stopped eating aged seven months.

At St Mary's Hospital in Newport, Teddy was examined. Immediately, the consultant thought something wasn't right and referred Teddy to the Evelina London children's hospital, where extensive tests were carried out.

At ten months, Teddy's liver was the size of a four-year-old's, "bulging at the sides".

The family spent five weeks at Evelina London, while specialists tried to figure out a complex medical puzzle, where no single diagnosis fit neatly into their thinking.

Eventually, doctors carried out a genetics panel on Teddy, mum and dad. 

Fast forward to January — after a year in which Teddy was still making regular visits to the Evelina and St Mary's, relying on being tube-fed.

Dan and Jess were called back to the Evelina for the results. Teddy and his parents all possess the same defective gene.

The couple have bravely come to terms with the tragic news four months on.

"As soon as the diagnosis was made, I was petrified," said Jess.

"The first week was horrific. It felt, in that moment, we were going to lose him.

"But even then, seeing Teddy awake, smiling and playing, made it so much better to get to grips with.

"After some time, we decided to take every day as it comes."

Dan, an estate agent's branch manager, said the hardest time when diagnosed was when Teddy was asleep — when realisation kicked in."

The couple are now focused on making Teddy's life — however long that may last — the happiest it can possibly be.

So far, Teddy has managed to confound much of what medical specialists have said.

Teddy has improved heart function, his liver has remained stable since he was aged ten months, has not shown signs of fatigue, nor is he breathless.

Dan said: "His heart has actually improved. They said it would never happen, but it has, so what else might happen to defy all the odds?

"A specialist told us a child with their heart in the position Teddy's is in are normally bed-bound.

"Teddy's never fitted with anything the doctors have told us."

Toddler, Teddy Ward, held by mum Jess, with dad Dan to her left and eight of the Three Peaks Challenge fundraisers, which includes Michael Joyce, George Huish, Sam McQueen, David Blackman, Luke Blackman, Nick Blyth, Kieran Leahy and Claire Mumford. James Bradshaw, another of the team, is not pictured as he lives on mainland. (Image: B.Debenham)

Teddy Ward, parents Jess and Dan and, left, fundraiser Betsy Blackman. (Image: B.Debenham)

The couple's other great focus is on giving fundraising support to the charity that supports them, the Lily Foundation — starting with the Three Peaks Challenge, to conquer Scafell Pike, Ben Nevis and Snowdon and a race night.

Dan, an Isle of Wight Rugby Club player and physio, has enlisted the support of nine clubmates to take on the Three Peaks in September and raise £10,000.

They are brothers Luke and Dave Blackman, James Bradshaw, George Huish, Claire Mumford, Michael Joyce, Nick Blyth, Kieran Leahy and Sam McQueen.

"Our rugby family have gone above and beyond to help us step back and be a family. The club has been amazing," said Jess.