In Your Community

Submitted by Sarah Steel Having been featured in the Liverpool ECHO last year, Sarah Steel, a mother from Southport whose daughter, Isla, suffers from a rare metabolic disorder, is now renewing her daughter’s appeal in an effort to generate funding for scientists to explore gene therapy trials. In 2018, after discovering little Isla’s hands were twitching, Doctors…

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ZoomWalkathon

ZoomWalkathon.com Video ConferencingIsla Rose Foundation is Actively Working to SaveChildren with Orphaned Rare DiseasesFOR IMMEDIATE RELEASE May 2020 (Southport, Merseyside) – The family of Isla Rose in Southport is fighting for the life of their 19-month-old daughter Isla Rose Steel. She was born in 2018 with a rare disease, Non-ketotic hyperglycinemia (NKH). It is an…

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Daily Mail

Mother whose baby has a rare condition that causes seizures which most children don’t survive now has hope after finding a 20-year-old US man who’s her ‘genetic twin’ on Facebook

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OTS News

A group of 20 individuals from Kew McDonalds in Southport have volunteered to complete a sponsored Snowdon climb on the 30th of October 2019. We are fundraising for the beautiful Isla Rose and the Lucas John Foundation.

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Liverpool Echo

‘Perfect’ baby girl diagnosed with a rare disorder after mum spotted her twitching. Little baby Isla has been diagnosed with a condition that is so rare, approximately only 15 children in the UK are still surviving with it. Read more about Isla story in the Liverpool Echo.

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