Tragic Borders youngster Rihanna Johnstone died this week at the age of just five, but her parents say they will always be grateful for the precious time they were able to spend with their “feisty wee girl” rather than lamenting that she was denied the chance of a longer life.
Little Rihanna faced a fight for her life from the moment she was born 15 weeks premature and quadriplegic in 2011 and had to contend with complex conditions including cerebral palsy and chronic lung disease, and it was only her spirit and determination that kept her going that long, say her parents, Brian and Shona Johnstone, of Galashiels.
She died suddenly on Wednesday, just weeks after a charity appeal was launched to buy potentially life-prolonging equipment for her.
Mrs Johnstone said: “We knew that we wouldn’t have long with her. She has beaten all the odds.
“Her feistiness and her stamina had kept her alive this long, but she just couldn’t fight it this time.
“If it wasn’t for her feistiness, she could never have lived so long. She proved them all wrong.
“Whoever met Rihanna, she touched them.”
Looking ahead to the future that they hoped they might be able to enjoy with her despite the odds against that, Rihanna’s parents had contacted Newlife, a charity for disabled children, seeking help to pay for a special walker aimed at keeping her limbs moving more freely as that, they were told, would offer her a chance of defying expectations and possibly even reaching her teens.
The couple have now thanked Borderers for their generosity in backing that appeal and, even though Rihanna can no longer benefit from it, they hope her legacy will live on in the form of continued support for Newlife, so that it can keep up its good work on behalf of other children facing similar ordeals.
Mrs Johnstone said: “We appreciate what everybody has done to help fundraise for Rihanna, but sadly she doesn’t need it now.
“But if people would still like to donate to the charity, we would urge them to that.
“We had to fight for everything for Rihanna and relied on charities for equipment for her, but these charities need donations from others. Even 20p will help somebody.
“We really just want to thank everyone for getting behind Rihanna and for supporting us.”
Their appeal for money for a walking frame for Rihanna had already raised £145, with a further pledge of £1,000, towards the £2,388 needed, and the charity says donors will now be updated and asked how they wish that funding to be used.
Newlife senior care services manager Carrick Brown said: “We were all so terribly sad to learn that Rihanna had passed away, and our thoughts are with her family. “The fragility of Rihanna’s health highlights why it is so important for disabled children to get the right equipment at the right time.”
The charity has previously funded £72,194 of equipment for 18 children in the area.
No date has yet been set for Rihanna’s funeral.