Friends run marathon for baby's rare disease

A Leeds mum will take on the London Marathon later to "shine a spotlight" on her son's rare genetic disorder which has no cure.

Jessika Barcynski's son Felix was diagnosed with Leigh's Syndrome, a mitochondrial disease, when he was six months old. The condition primarily affects the brain and spinal cord, and can lead to significant physical and neurological disabilities.

Joined by her friends in the capital, Barcynski is running for the Lily Foundation - a charity that funds research on the disease - and they have already raised nearly £10,000.

She said: "We're so grateful for everyone who's sponsored us and donated... and it makes us feel like we're not in this alone."

Barcynski, from Farsley, said she noticed something was not right with Felix, who is now 19 months old, when he stopped meeting his milestones and also stopped laughing, smiling and crying.

He then started having seizures so, during a week on a children's neurology ward and some "really brutal tests" including a lumbar puncture, he was diagnosed with life-limiting mitochondrial disease.

"We have extremely low days, but as a family, we're dealing with it really well," she said.

"From day one, we were told that Felix will now be on his own path and have his own journey and that's just what we're having to kind of navigate day-to-day really."

She and Felix's father Joe connected with the Lily Foundation, which does "incredible things" for families living with the condition.

"I was desperate to just seek out support and friends and all the information that I could," she said.

"So it was a bit of a no-brainer when I found out that the foundation had quite a few places to be able to run for them."

The former TV worker is already a runner and previously lived in London so taking part in the marathon holds a "special place" in her heart, she said.

Barcynski also said that training had given her a much-needed break from worrying about things like hospital appointments.

Her friends Jon Harrison from Menston in Bradford and Joe Garner from Glasgow will be running alongside her.

"It's been a good bit of headspace for me as well," she said.

Felix also has epilepsy as a side effect, and has "delays in every area", said Barcynski.

"But something that's really lovely is that recently, he's just started waving... so we're really happy to see things like that."

The Lily Foundation was founded in 2007 by Liz Curtis, in memory of her daughter Lily, who died from mitochondrial disease at eight months old.

The charity helps more than 1,500 families in the UK.

Barcynski said: "Liz is just an incredible lady.

"The charity is literally bringing cures closer and closer and if that could happen in our lifetime, then that would be transformational to our family."

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