We are running for Ruby… little Lancaster girl with rare disease inspires Great North Run challenge

Ruby Wren Marshall, three, from Halton attends Furnace Barn Day Nursery and manager Heidi Keates who is doing the Great North Run alongside Ruby’s mum Nikki Marshall, colleague Katie Clarkson and her husband Bryan Clarkson, have already raised £1300 from a community field day to go towards The Lily Foundation set up for Ruby.

Ruby suffers from a rare mitochondrial disease called Pearson’s of which there are currently just over 30 children in the world with it.

Heidi Keates said: “Myself and Katie look after Ruby at Furnace Barn pre-school, we were prompted to run and raise money through a community field day as we are actively involved in Ruby's day to day life and felt we needed and wanted to support her and the family.

"We looked after Ruby's older sisters also so have been part of the family's lives for about six years.

"It's a challenge and neither me and Katie can run at all and we have since April doing a couple of runs a week.

"Katie's husband Bryan is also doing the run to support and Ruby's mum Nikki.

"We have raised past what we need it's almost more now about raising the profile of mitochondrial disease and particular Pearson's syndrome which is really rare and incurable at the moment but every penny counts.

"There is lots of charity fundraising through a team that's on Facebook called Team Ruby which follows her life, treatment fund raising and adventures.

"We opted for this charity as it was a challenge to myself, Katie and Bryan.

“Mum Nikki always says Ruby is living with rather than dying from Pearson's.

“I'm joining Team Ruby to give hope to all those affected by mitochondrial disease.”

On the gofundme page it says: “Ruby Wren is an absolute delight and I take great pleasure in being a part of her life at pre school. She is a sassy, creative, amusing, bright and articulate little girl, but equally very poorly with regular trips to hospital which she seems to take in her stride as she does with life in general.

"This is the reason why I've chosen to do the Great North Run for this charity (The Lily Foundation).

“Ruby Wren Marshall was born perfectly healthy on February 24, 2021 and remained so until she was around six months old when she was found to be severely anaemic.

"Her bone marrow wasn’t working well. It would be a further five months until she was diagnosed with Pearsons Syndrome; a mass deletion of her mtDNA.

“This means some of her mitochondria in her cells (which provide the energy for the cells to work) do not work properly.

"As she grows the faulty mtDNA will start overpowering the healthy ones resulting in failure of her pancreas, followed by liver, kidneys, eyes, ears, heart, muscles and her brain.

“Science can and will beat this, but it needs to be sooner and not later for Ruby, She just needs better batteries in her cells.

“I have created this fundraiser to help - so please help me help Ruby, The Lily Foundation and all those with mito by donating today.

“Everyday in the UK a child is born who will develop mitochondrial disease - we need to help them now.”

The Great North Run which Heidi, Nikki, Katie and Bryan are taking part in is on September 8.

The fundraising page has already raised £735.

To donate visit https://www.justgiving.com/page/heidi-keates-1709817090834