Aberdeen parents Lynette Allan and Duncan Barclay have raised more than £7,000 to raise awareness of the extremely rare condition that killed their 14-month-old daughter.
Their “little darling” Sandie Jane Barclay was diagnosed with Tango2-related metabolic encephalopathy and arrhythmias and a fundraiser set up by the pair has now significantly surpassed its £500 target in just two weeks.
Up until Sandie was six months, the couple say “everything was perfect” but then “all of a sudden, in the blink of an eye” everything changed.
“I thought she’s not reaching her milestones, she’s not where she should be at,” Miss Allan, 29, said.
“From eight months to 14 months we were back and forth to the hospital with her as she just kept getting little colds, she would get temperatures but they didn’t know what was wrong with her.”
Sandie was discharged from hospital and was meant to be staying with her grandmother for the night when her condition suddenly worsened.
The tot became lethargic and non-responsive as her parents urgently called 999.
Weeks later, doctors had to put her into a coma and Scotland’s Charity Air Ambulance (SCAA) transferred her to Edinburgh.
Miss Allan said: “We weren’t able to go with her so my dad had to drive us down to Edinburgh. It was the longest hours of our life.”
Sandie died on March 28, one day before doctors officially diagnosed her with one of the world’s rarest conditions.
“That’s why I wanted to raise awareness of everything really – to help other people,” Miss Allan said.
“There has to be more people in Scotland going through the same thing – I hope not, but there maybe is and they don’t have a diagnosis of it as of yet.”
Sandie’s parents wanted to celebrate her life by hosting a big princess ball as only 10 members of immediate family were allowed to attend her funeral due to coronavirus restrictions.
But with no answers as to when everyone will be able to gather again, Miss Allan decided to start an online fundraiser and launch a raffle so she can donate money to the Tango2 Research Foundation, SCAA and the hospital who cared for Sandie.
The couple last night issued their thanks to those who had donated thus far.
You can support the fundraiser online and arranged raffle donations by visiting the Our Little Darling Facebook.
