Six-year-old with rare blood condition hailed a hero

Ruby Rae-Pearson pictured with her sister. Picture: contributed
Ruby Rae-Pearson pictured with her sister. Picture: contributed
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MINI marvel Ruby Rae-Pearson is being hailed a hero – encouraging others to give blood despite battling her own rare disorder.

The six-year-old from Bathgate, West Lothian, is all too aware of the life-saving value having already had seven transfusions after being diagnosed with hereditary spherocytosis.

So with mum Lisa she set up a Facebook page to encourage others to donate – with some startling results.

“I’ve had about ten people tell me they’re going to give blood today,” said mum Lisa, 41.

Ruby was first diagnosed at just six weeks old. “The doctor mentioned how yellow she was and we never thought anything of it,” said Lisa.

Little Ruby went for tests at St John’s Hospital in Livingston and the condition was confirmed – meaning her spleen rejects red blood cells and attacks them.

“If I could swap place with her I would. She gets really tired and short of breath,” said Lisa.

“They say it’s hereditary but neither me or my partner have any family history,” added Lisa, who lives with joiner Darren Pearson, 39, Ruby and three of her four sisters.

Ruby’s condition has left her prone to regular illness and has affected her social life – to the point Balbardie Primary School has to post a look-out in the playground.

“She catches every bug going and she’s got an enlarged spleen so we have to make sure she doesn’t knock against it,” said Lisa.

Ruby’s illness also means she misses school from time-to-time and holidays are also disrupted – with her latest transfusion over Easter.

So rare is the condition, it only affects 2,000 people in northern Europe.

Lisa has to keep her away from some activities for fear of her getting sick – though thankfully Ruby can still enjoy her favourite hobby, swimming.

“I have to tell relatives to stay away if they’ve got anything because it affects her so much,” said Lisa, who is only too aware herself how important giving blood can be.

“I had a miscarriage in February and two bags of blood saved my life,” she said. “Now I can’t give blood but I’m getting relatives to.”

More than 150 people are now following resilient Ruby’s Facebook page – reading updates of her progress.

It recounts the story of Ruby’s diagnosis in her own words six years ago, how repeated tests revealed her low red blood cell count and her first transfusion in a special baby care unit.

“I was the biggest baby that was ever there,” reads one post. “They tried and tried to get a vein in my arms and failed, so they tried my foot.”

Even back then, doctors were amazed at Ruby’s battling qualities – fighting them off while they tried to put the line in.

Eventually, they managed to give Ruby 120mls of blood and she was allowed home but had to go back every week for more tests. She was three before she needed another transfusion.

A Give Blood spokesman said: “By giving blood, every donor helps us meet the challenge of providing life-saving products whenever needed.”

andy.shipley@edinburghnews.com