Isla Rose Steel, a seven-year-old with NKH, is completing 1,000 steps to raise £1,000 for other children with the rare genetic disorder. Her challenge aims to raise awareness and support for NKH research and families affected by the condition.
A courageous seven-year-old girl who is learning to walk is taking on a heartfelt challenge to complete 1,000 steps in support of other children living with a rare condition.
Isla Rose Steel, from Southport , lives with NKH , a rare genetic disorder which causes high levels of glycine to build up in the body and can severely affect brain development and movement. Despite her condition, Isla is determined to raise £1,000 by completing 1,000 steps as part of a fundraising effort launched on Saturday to mark NKH Awareness Day.
Her family say each step carries a powerful message of hope and resilience for children affected by the condition. Isla’s proud mum, Sarah, said: “Isla is taking part in something incredibly powerful - 1,000 steps for 1,000 pounds.
“Isla is seven years old. She lives with NKH. 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, and 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. 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. ” Isla was previously recognised for her bravery after being awarded a Sefton Child of Courage Award at the Grand Pride of Sefton Awards in Southport in April 2025. NKH is a rare condition in which excess glycine builds up in the body, particularly affecting the brain and causing neurological complications.
Her fundraising appeal is now aiming to raise awareness as well as vital support for families affected by the condition. To donate visit here . Subscribe to our daily newsletter LANCS LIVE NEWS and get all the biggest stories from across Lancashire direct to your inbox
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