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Father running London Marathon in memory of daughter

Chloe Harcombe
BBC News, Wiltshire
Tom Farnell Tom Farnell and his daughter, Ocean. She is sat at an orange high chair and he is leaning close to her, with his hair brushing her face. She has short blonde hair and he has brunette short hair and facial hair. He is smiling with his eyes closed.Tom Farnell
Tom Farnell says Ocean, who had Rett syndrome, is his "main inspiration"

A bereaved father is running the London Marathon in memory of his daughter Ocean who died of a rare genetic disorder at the age of four.

Tom Farnell, from Swindon, Wiltshire, is raising money for Ronald McDonald House Charities, which supported his family while his daughter, Ocean, was in hospital.

Ocean spent much of her life at Oxford Children's Hospital being treated for Rett syndrome, a rare genetic condition that affects brain development and causes severe mental and physical disabilities.

"The little bit of pain or whatever that I'll go through is literally nothing... compared to what she went through," Mr Farnell said, ahead of the race on 27 April.

Mr Farnell, 36, and his wife Kaomi noticed "something was wrong" with Ocean's development in the months after she was born.

Unlike their older son, she failed to sit up independently and struggled to breathe.

A year later, she was diagnosed with Rett syndrome.

Tom Farnell Tom Farnell with his late daughter, Ocean. They are both lying on the floor on their front, looking at each other. Ocean is very young with short blonde curly hair and a feeding tube in her nose. Tom has short brown hair and facial hair. He is looking at Ocean with a big grin on his face. Tom Farnell
Ocean had Rett syndrome, a rare genetic condition affecting brain development

Mr Farnell, an electrician, said Ocean's health deteriorated "massively" over the next three years, before her death in 2023.

When she was in intensive care, the Ronald McDonald House Charities organised accommodation near the hospital in Oxford so the family could spend time with her without having to drive in from Swindon every day.

Speaking about the staff, Mr Farnell said: "They're so nice and welcoming – whatever you need, they'll get.

"We couldn't have asked for any more from them, especially towards the end of Ocean's life when it was very, very difficult."

Tom Farnell Tom Farnell pictured outdoors on a run in a woods. He has short brunette hair and facial hair. He is wearing a white and orange T-shirt with the Ronald McDonald House Charities logo on the chest. He is looking directly at the camera and smiling.Tom Farnell
Mr Farnell is raising money for Ronald McDonald House Charities

Mr Farnell said Ocean was his "main inspiration" for the marathon.

So far, he has raised more than £3,000 for the charity.

"Anything will go a long way in helping them," Mr Farnell said.

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