A police officer’s son is raising money for his baby sister in the hope of finding a cure for her life-limiting illness.
Eighteen-month-old Ruby was diagnosed with an extremely rare condition called Pearson syndrome which means she may not live beyond early childhood.
But her determined brother, Jack, 12, wants to do everything in his power to ensure his beloved sister remains in his life.
Jack will embark on the Three Peaks Challenge on Wednesday, August 24, where he will climb the three tallest mountains in the UK – Ben Nevis, Scafell Pike and then Snowdon – within 24 hours.
He has already raised more than £3,000 for The Lily Foundation, a charity aimed at supporting children and families with the condition.
Jack’s mum, PC Rebekah Jackson, from Nottinghamshire Police, said: “The news has had a real impact on Jack. Ruby is only 18-months-old.
“She is in and out of hospital and Jack wanted to do something that could save her life. He is putting this money into the Foundation in the hope to find a cure.
“He says ‘if it does not help her then hopefully it will help someone else.’
“He loves his sister, and it is a huge thing for him to take part in this challenge. I am so proud of him. I know he will do it.”
Jack will be taking part in the challenge with his dad, former Nottinghamshire police officer Jonathan Marshall.
Speaking about why he took up the challenge, Jack said: “In January this year my dad sat me down to tell me that Ruby had been diagnosed with Pearson’s Syndrome. I had never heard of it before, but as I began to learn, my heart began to sink deeper.
“I had just started high school, struggling to settle in and just lost my nana.
“The news came as a massive shock with a feeling of helplessness. I understand a bit about what Pearson’s Syndrome is as I do science at school, understanding about cells and the body.
“Dad told me that Ruby’s condition is one that will deteriorate at an unknown speed, and there is no cure.
“Her life on this earth is limited, with no prediction of when it will end. This could be next week or in a few years time.
“It hurts me so hard now and I’m going to be utterly heartbroken when I lose my little baby sister. I would love for my Ruby to be given a good chance at life like everyone else.
“I don’t want her to die. She is so special to us all. I like to dream that a cure can be found to save her life. She deserves it.
“She is so happy and cheery despite feeling rough from all the prodding and poking from all the treatments. I want to do this challenge to push myself well out of my comfort zone to try and raise some money and awareness to find a cure to save our Ruby’s life so I can grow up with her.
“This is a crazy challenge and will push me so much both mentally and physically, but I will do anything to try and save Ruby’s life.”
Pearson’s Syndrome falls under the umbrella of mitochondrial disease for which the Lily Foundation is all about.
Ruby has mass deletions in her mitochondrial DNA. Although a genetic issue, it was just a random mutation, and she is extremely unlucky.
There are around 20-30 living children with this syndrome in the world right now, that’s how rare and unknown it is.
To help with Jack’s fund-raising drive log onto Jonathan Marshall is fundraising for The Lily Foundation (justgiving.com)
