A courageous seven-year-old girl with a rare condition who is learning to walk is determined to complete 1,000 steps to help other children with the same condition.
Isa Rose Steel, from Southport, lives with NKH (non-ketotic hyperglycinemia), a genetic disorder that affects infants’ brains.
She would love to raise £1,000 for her 1,000 steps with people able to donate here: (20+) Facebook
Isla was awarded a Sefton Child of Courage Award for her bravery at last year’s Grand Pride Of Sefton Awards.
She launched her fundraising appeal on Saturday (2nd May 2026), which was NKH Awareness Day.
Her proud Mum Sarah said: “Isla is taking part in something incredibly powerful – 1,000 steps for 1,000 pounds
“Isla is 7 years old. She lives with NKH (non-ketotic hyperglycinemia). She is only just learning to walk, but over the next few days she will take on a challenge of 1,000 steps for NKH.
“Every step she takes carries meaning far beyond distance.
“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.
“This is not just a walk. It is a message –
“That these children matter.
“That their lives matter.
“That awareness leads to understanding, and understanding leads to hope.
“If you are able, please consider supporting Isla’s journey and the work of the Isla Rose Foundation, helping to raise awareness, help support families, and bring light to a condition so few know, but so many live with.
“Every step counts. Every donation counts. Every voice raised matters.
“This may take a few days to complete but bear with us! She is going to do her very best.
“This may be in her harness, her walker, her safety belt or holding my hand!
“We have had to order a new Fitbit to count her steps! So we are eagerly awaiting that to arrive and we are out!
“Wish her luck!!”
Nonketotic hyperglycinemia (NKH) is a rare disorder in which abnormally high levels of a molecule called glycine build up in your baby’s body. The excess glycine accumulates in tissues and organs, particularly your baby’s brain, leading to neurological problems.
Isla was awarded a Sefton Child Of Courage Award at the Grand Pride Of Sefton Awards in Aril 2025 at The Grand in Southport.
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