Cloonavin goes green for World Mitochondrial Disease Week
Mon, September 14, 2020
Green light will shine at Cloonavin this week as Causeway Coast and Glens Borough Council joins a global campaign to raise awareness about Mitochondrial Disease.
The initiative in support of World Mitochondrial Disease Week follows a request from a Coleraine mother whose child was diagnosed with the condition three years ago.
Carly Kerr’s daughter Caitlin had been healthy and well until a sudden seizure led to her diagnosis. Since then the genetic condition has left her unable to see, walk or eat by herself. The 12-year-old is the only person in Northern Ireland living with her specific gene deficiency.
The Mayor of Causeway Coast and Glens Borough Council Alderman Mark Fielding said: “The Kerr family’s experience highlights the devastating effects of mitochondrial disease. There is currently no cure so awareness and research are vital to help people like Caitlin in the future. I would like to pay tribute to Carly for all her efforts and I’m glad that we are able to support her by making this gesture and joining the campaign.”
Carly said: “When Caitlin was born I had no idea that this would happen to her, but our lives have now changed forever. Since then I have received a lot of guidance from The Lily Foundation, which is the UK's leading mitochondrial disease charity, and I’m so grateful that the charity was there for me from the time of Caitlin’s diagnosis.
“Some people might know that Coronation Street is currently running a storyline on the disease and this has definitely got more people talking about it and I hope that by sharing our experience we can generate much needed awareness about the condition.
“Caitlin now attends Sandelford School in Coleraine, and they are fantastic with her. It’s a wonderful school, and no-one knows the difference they have made to Caitlin and myself since she started there.
“I want to take this opportunity to thank Liz at the Lily Foundation, everyone at Sandelford and indeed the Mayor of Causeway Coast and Glens Borough Council for showing his support for us in this way.”
Liz Curtis, CEO and co-founder of The Lily Foundation, commented: "Mitochondrial disease can affect any person at any time of life, so it's vital to educate and inform the public about it, and to fund research into effective treatments. We're so proud of our supporters who have worked so hard to raise awareness about this important cause, and grateful to the local councils and sites that have agreed to take part."
Mitochondrial disease, or mito, refers to a group of progressive and often life-limiting genetic disorders that affect one person born in the UK every day. Since 2007, The Lily Foundation has worked to raise public awareness about the disease, support those affected, and fund scientific research towards a cure.
For more information visit www.thelilyfoundation.org.uk or email liz@thelilyfoundation.org.uk.
