Lancaster mum takes on Great North Run to help find cure for three-year-old daughter's rare disease

Tuesday, 3 September 2024 12:45

By Greg Lambert @greglam72

A mum from Halton is set to take on the world's biggest half marathon to help find a cure for her three-year-old daughter's rare condition.

Nikki Marshall's daughter Ruby has Pearsons syndrome, a rare life limiting disease, which could lead to complete organ failure by the time she is eight years old.

Ruby, from Halton near Lancaster, 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.

Five months later, she was diagnosed with Pearsons Syndrome; a mass deletion of her mtDNA.

It means that some of the mitochondria in Ruby's cells, which provide the energy for her cells, 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.

Ruby's family and friends have been on a fundraising drive to help find a cure for the disease, and have so far raised more than £39,000 via the main Team Ruby online page.

Generous people and businesses have also been donating free treats and days out for Ruby and her family (pictured below), so she can enjoy as many fun-filled years as possible.

LISTEN to Nikki, pictured below with her family, talking to Beyond Radio

Nikki said: "I’m running to try and get back to some fundraising to help find a cure for my daughter’s condition.

"Ruby is a miracle and every day I pinch myself and feel grateful that she is as well as she is.

"I’m optimistic her honeymoon period of good ish health will last for a couple more years until her organs deteriorate and in that time I want to do all I can.

"So I’m running the Great North Run with a team of Team Ruby supporters (thank you).

"We’ve had the most purest of life lessons knock on our door that life is very short and to be grateful for every day. I want to run in celebration that I can run and my health is good so I can look after my miracle. It is very symbolic for me."

Nikki and her friends Katie Clarkson, Katie's husband Bryan, and Heidi Keates, will run for The Lily Foundation, the UK's leading mitochondrial disease charity.

The Great North Run is a 13.1mile run from Newcastle upon Tyne to South Shields on Sunday September 8.

You can find Nikki's fundraising page for The Great North Run HERE.

Katie Clarkson's fundraising page is HERE.

The main Team Ruby fundraising page is HERE.