Running around... but Rubi faces race against time to beat rare illness
WITH bags of energy to spare, Rubi Paice loves running around the garden as much as any toddler.
But watching her exuberance is a bittersweet experience for her parents – because they know it could be short-lived.
The three-year-old is suffering a life-threatening illness so rare she is thought to be the only person in the UK with it.
Her immune system is attacking her kidneys at such a rate she will be dependent on renal dialysis and need a transplant
‘Every day is a worry’
by the time she is five. Yet as she bounds around the family home in Inverurie, Aberdeenshire, with brothers Sean, nine, and five-year-old Harry, she amazes everyone with her resilience.
Her mother Denise, 41, said: ‘You’d think there was nothing wrong with her. Sometimes I’ll look at her and think, “How can she be so ill?”.
‘But we’ve been told that by this time next year, if she’s not on dialysis she’ll be one of the lucky ones. If she got something like measles, which is on the rise, that’s all it could take to send her kidneys into complete fail- ure. And because her immune system is compromised, she hasn’t been able to complete the immunisation programme.’
Life changed for the family in April when Rubi woke up with a swollen face and creases in the skin around her wrists.
Ten days later doctors broke the news that she had the most aggressive form of focal segmental glomerulosclerosis.
The disease is so aggressive that just picking up a bug at a soft play area or public swimming pool could leave the toddler fighting for life.
In a bid to maintain her health for as long as possible, she must adhere to a strict daily medication regime and rigid diet.
Mrs Paice and her husband Taran, 37, plan to be tested to see if either is a match for an organ transplant if their daughter’s kidneys fail.
Mrs Paice added: ‘Our whole world has been turned upside down. Until eight months ago we had a perfectly healthy child.
‘Every day is a worry. We don’t know what the future holds for Rubi. We just take it one day at a time and are making sure there are lots of happy memories.’