'Our world shattered': The heartbreaking reason Cardiff landmarks were lit up green

Landmarks around Cardiff and across the world were lit up green on Saturday to raise awareness of a complex disease Credit: Kalpna Keshra

  • By Beth Thomas

A mother has said her family's "world shattered" when her baby was diagnosed with a life-limiting condition. Cardiff landmarks were lit up green on Saturday to raise awareness of the illness.

Landmarks in Cardiff and across the world were illuminated green on Saturday night to raise awareness of mitochondrial disease.

Mitochondrial disease is an umbrella term used to describe a vast group of diseases affecting energy production. It occurs when our mitochondria aren’t able to provide the energy our cells need to work properly.

Riaan Gopal, from Penarth, was diagnosed with the life-limiting condition at the start of this year when he was just 16 weeks old. He had initially been admitted to hospital after suffering from severe reflux.

Riaan was diagnosed with mitochondrial disease at just 16 weeks old Credit: Kalpna Keshra

As Riaan was struggling to gain weight and grow, his medical team believed there was an underlying cause to his symptoms. At just seven weeks, Riaan was diagnosed with hearing loss which was part of the genetic condition.

After he suffered a seizure, Riaan was placed in a coma and admitted to the Intensive Care Unit. His parents were told that he had mitochondrial disease.

They were unaware that they both had pathogenic genes (a change in the gene's DNA that can cause or increase the risk of developing a disease), meaning they had a one in four chance of having a baby with the condition.

"We had no idea," Kalpna Keshra, his mother, said. "We have two other boys who are nine and six, luckily they're healthy. We just got really, really unlucky with Riaan."

Baby Riaan with his mum Kalpna in hospital Credit: Kalpna Keshra

Six-month-old Riaan has a rare inherited genetic disorder, having a mutation in the KARS gene. He is the first case of the KARS 1 mutation in Wales, with only 50 reported cases worldwide.

His parents have been told that their time with their baby son will be limited. His illness is progressive and terminal and there is no cure or treatment. "It felt like the rug had been pulled from beneath us," Kalpna said. "Our world shattered. There are just no words to describe that diagnosis.

"We knew the outcomes when it comes to mitochondrial disease are poor. Our doctors were very forthcoming with that, they didn't sugarcoat anything and we appreciated that honesty."

The Wales Millennium Centre illuminated green to raise awareness of mitochondrial disease Credit: Kalpna Keshra

The family were pointed towards the Lily Foundation, a charity which raises funds for mitochondrial disease research, for help and are receiving support from Tŷ Hafan.

To raise awareness of the condition, over 383 monuments and buildings worldwide were illuminated green on Saturday night, with Cardiff also illuminating its landmarks.

Cardiff Castle, City Hall, Wales Millennium Centre, Shree Swaminarayan Temple Cardiff and the Welsh Government offices in Cardiff all took part in the illumination.

Cardiff Castle and Shree Swaminarayan Temple Cardiff illuminated green on Saturday night Credit: Kalpna Keshra

For Kalpna and her family, it's an important way to raise awareness of the condition.

"It's so important to get that conversation so people are aware of it" she said.

"Sadly, the reality of mitochondrial disease, because so little is known about it, often it takes a long time for the diagnosis to be made."

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