LITTLE Ruby Marshall’s bucket list reads like that of a typical three-year-old – but tragically the tot faces a race against time this summer to tick her dreams off.
Ruby was diagnosed with mitochondrial disorder Pearson syndrome as a baby.
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Now her parents want her to live her life to the full before she suffers complete organ failure which, tragically, could happen before she is eight.
Ruby and her police officer parents Nikki and John have compiled a bucket list of fun things for Ruby to do to create magical lasting memories for them and her three siblings.
Detective constable Nikki, 39, said: “Ruby has undergone three years of treatment which means, for now, she is well enough to have days out.
But she’s never been to a theme park or gone camping, on a boat or had a trip to the cinema.
“She dreams of doing all these things, as well as riding on a donkey at the seaside, meeting alpacas and going for a country picnic.
“We hope to do all of them to bring her true happiness before it’s too late.
“We are on an adventure to find the beauty in the ordinary, and celebrate that.
“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 was five months old and started to feel tired.
Tests finally revealed she had Pearson’s syndrome.
It is so rare she is one of only three children with it in the UK.
Nikki said: “It means the cells in her bone marrow do not have enough energy, so she doesn’t produce many red blood cells, which leaves her weak.
“Amazingly, bone marrow can repair itself and for nearly three years she has undergone regular blood transfusions to keep her alive and repair her bone marrow.
“But her bone marrow will diminish again over time and this will slowly start to affect cells in her kidneys, liver, muscles, heart, eyes and ultimately her brain, which I am dreading.
“Sadly, she will never be an adult — we know that.
“There is no cure. It’s a lot to know you are going to lose your child.”
The diagnosis has been tough not only for Nikki and John, 40, who is also a detective constable, but also for Ruby’s siblings Freya, five, Connie, seven, and half-brother Jack, 14, who all adore her.
We’re determined to give her a wonderful loving life while we can
Nikki Marshall
Nikki says: “The blood transfusions have worked brilliantly but it meant that family days out were impossible.
“We are trying to cram things in.
“We’re determined to give her a wonderful loving life while we can.”
The family have raised money for research and to support other families living with mitochondrial diseases.
John says: “We want to give something back.
“So many kind strangers have helped Ruby by giving blood.
“It is magical and we are constantly urging people to give blood, not only for Ruby but for all those who just would not be here without those kind donations.”
Can you help?
If you want to help Ruby’s dreams come true, contact [email protected]
