Video: Free Derry tribute to Beibhínn to raise awareness of ‘Mito’ disease

The family and friends of Beibhnns Hegarty-Devine at Free Derry corner including parents Carla & Kevin, on right.

The Guildhall Clock was also lit green as part of a wider campaign to raise awareness of Mitochondrial Disease - the complex condition to which Beibhínn tragically lost her life in January.

Beibhínn’s heartbroken parents Kevin Hegarty and Carla Devine were joined by dozens of well-wishers at the monument.

Her proud uncle Gareth read a few words about the relatively rare and little understood condition.

“Mitochondrial dysfunction occurs when mitochondria, the powerhouse of our cells, don’t work as well as they should do,” he explained.

“Where dysfunctional mitochondrial DNA are present a variety of developmental, muscular and organ anomalies may begin to develop.

“Mitochondrial Disease can be genetic or inherited. It’s a chronic condition that is sadly progressive and can affect anyone at any time in their life,” he added.

Although treatment can relieve symptoms any metabolic stress on the body, such as an illness, can cause a worsening or progression of the illness.

And sadly in 2019 it is incurable.

“There are very few treatments for Mitochondrial Disease and there is currently no cure,” Gareth said.

Sinn Féin Councillor Aileen Mellon recently raised the matter at Derry City and Strabane District Council and successfully proposed that civic buildings go ‘Green for Mito’ during Mitochondrial Disease Awareness Week, from September 15 to 21.

She said sufferers and their families needed support.

“Today as part of Beibhínn’s campaign Beibhínn’s family are raising awareness to promote support for families throughout the illness, not only for the child, but for the family and the wider circle around.”

She continued: “This is a global campaign hosted by International Mito Patients (IMP) involving illuminating landmarks in green to raise awareness of Mitochondrial Disease (mito).”

Liz Curtis, CEO and co-founder of The Lily Foundation, a charity committed to finding a cure for Mitochondrial Disease, through funding research, raising awareness and family support, said it was wonderful to see the Guildhall clock lit green for the week.

“We’re overwhelmed by the support we’ve had for this important initiative, and delighted to see so many famous buildings taking part,” she stated.