LITTLE Ruby Marshall’s wish list looks like that of a typical three-year-old – but tragically the little one faces a race against time this summer to make her dreams come true.
Ruby was diagnosed with the mitochondrial disorder, Pearson syndrome, as a baby.
Now, her parents want her to live to the fullest before she suffers complete organ failure, which, tragically, could happen before the age of eight.
Ruby and her police officer parents Nikki and John have compiled a list of fun things for Ruby to do to create lasting magical memories for them and her three siblings.
Detective Nikki, 39, said: “Ruby has undergone three years of treatment, which means for now she is well enough to spend days outside.
But she has never been to a theme park, camping, boating or going to the movies.
“She dreams of doing all these things, as well as riding a donkey by the sea, meeting alpacas and having a picnic in the countryside.
“We hope to do all of this to bring you true happiness before it is too late.
“We are on an adventure to find the beauty in the ordinary and celebrate it.
“We want to keep her with us, happy and healthy, for as long as possible.”
The family, from Lancaster, had no idea anything was wrong until Maisy Mouse fan Ruby turned five months old and started feeling tired.
Tests finally revealed that she had Pearson syndrome.
It is so rare that she is one of only three children with the condition in the UK.
Nikki said: “This means the cells in the bone marrow don’t have enough energy, so it doesn’t make many red blood cells, which makes it weak.
“Amazingly, the bone marrow can repair itself and for almost three years she underwent regular blood transfusions to keep her alive and repair the bone marrow.
“But her bone marrow will shrink again over time and this will slowly start to affect the cells in her kidneys, liver, muscles, heart, eyes and ultimately her brain, which I fear.
“Sadly, she will never be an adult – we know that.
“There’s no cure. It’s a lot to know that you’re going to lose your child.”
The diagnosis was difficult not only for Nikki and John, 40, who is also a detective, but also for Ruby’s siblings Freya, five, Connie, seven, and half-brother Jack, 14, who adore her.
We are determined to give her a wonderful love life while we can
nikki marshall
Nikki says: “The blood transfusions worked really well, but it meant family outings were impossible.
“We are trying to improve things.
“We are determined to give her a wonderful love life while we can.”
The family raised money for research and to support other families living with mitochondrial disease.
John says: “We want to give something back.
“So many kind strangers helped Ruby by donating blood.
“It’s magical and we are constantly encouraging people to donate blood, not just for Ruby, but for all those who simply wouldn’t be here without these kind donations.”
You can help?
If you would like to help Ruby’s dreams come true, please contact sundayfeatures@the-sun.co.uk
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