Girl told she would never walk takes on step challenge

A seven-year-old girl who doctors said would never walk is taking on a 1,000 step challenge to raise funds to help other children with the same rare condition as her.

Isla, from Southport, Merseyside, was diagnosed with life-limiting non-ketotic hyperglycinemia (NKH) metabolic disease at two weeks old.

She is aiming to raise £1,000 with 1,000 steps for Isla Rose Foundation set up in her name to fund therapy and research for NKH.

Her mum, Sarah, said she was so proud of her daughter, who is learning to walk, adding: "It is mind blowing. I was told Isla would never walk and be completely bedridden. She has beaten the odds in so many ways."

NKH is a genetic disorder caused by a defect in the enzyme system that breaks down the amino acid glycine which causes a build up in tissues and fluids which particularly affects the brain.

Sarah said despite her daily challenges, Isla, who won a child of courage award at the Grand Pride Of Sefton Awards in April 2025, was a "happy little soul".

The 39-year-old said it had blown her mind how far her daughter had come, especially in learning to walk.

Sarah set up the foundation in her daughter's name in 2019.

She said it funded therapies for children with NKH, as well as specialist equipment and research and brought awareness to the little-known condition.

She said the 1,000 steps for £1,000 challenge while Isla is learning to walk was "incredibly powerful".

Her steps may be in her harness, her walker or her safety belt or holding her mum's hand with "every step carrying meaning far beyond distance", her mum said.

"She walks for herself, for her strength, her courage, and her determination in the face of a rare and complex condition.

"She walks for the children who are no longer here, whose battles with NKH ended far too soon but whose lives will never be forgotten.

"And she walks for every child still fighting today, quietly, bravely, and often unseen - just to survive each moment."

She said it was "not just a walk".

"It is a message - that these children matter and their lives matter."

Prof Nick Greene of University College London (UCL) which is a leading research centre for NKH, said Isla's effort to raise awareness of disease was "wonderful".

"Most people take the ability to walk 1,000 steps for granted, but for Isla this is a major challenge and reflects her determination in learning to walk and the support from her family."

He said NKH was a "devastating and life-limiting" disease with no cure but UCL's research "has given us a better understanding of NKH and we have been working to develop new treatments".

He said this includes gene therapy which aims to restore the function of the affected gene.

Prof Nick said: "Building on the successful development and evaluation of gene therapy in experimental models of NKH we are working towards completion of key steps including safety testing before a first clinical trial in children could be carried out.

"The goal is to make treatments available that would significantly improve the quality of life of children like Isla with NKH and this is why funding for research and clinical translation is so crucial," he added.

Sarah praised the work of UCL which is one of only two specialist research centres worldwide, with the other located in the US.

She added raising awareness of the little-known disease and money to fund research would "hopefully lead to finding a cure".

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