Words & photos: John Baron
The parents of a Bramley girl with a rare condition affecting only one in a million children has today launched a new national charity to raise funds for more research.
Six-year-old Zoe Lightfoot has Infantile Neuro Axonal Dystrophy (INAD), a rare genetic degenerative condition with a life expectancy of just five to ten years. The neurological condition has left Zoe unable to speak or stand, and she struggles to swallow.
Her parents Christine Hamshere and Steve Lightfoot, of Moorland View, marked the launch of the Cure INAD UK charity on the steps of Leeds Civic Hall.
They were joined by Leeds Lord Mayor Cllr Asghar Khan, Bramley and Stanningley councillor Kevin Ritchie and child ambassador Willow Bell who plays Millie Tate in TV soap Emmerdale, alongside family and friends.
Civic buildings are tonight being lit up in charity colours blue and green to support the launch.
Mum Christine told WLD that she hoped the new charity would raise money for much-needed research and find a cure for the condition. She added:
“If we can find a cure it will help children worldwide, but we wanted to start a UK chairty so we could start to take donations.”
Since the diagnosis three years ago, Zoe has lost mobility and her speech. Her parents ran a fundraising campaign which raised more than £28,000 to send her to the Goryeb Children’s Hospital in New Jersey in America.
The family has visited four times since November 2018 as part of a clinical drugs trial it is hoped will curb her decline.
The Coronavirus pandemic put paid to the trips, but Zoe has been receiving deliveries of the drugs from the US to her home. Mum Christine added: “The drugs are making a difference and it is helping her, you can see that. It’s not stopping the progression of the condition, which is why more research is needed.”
Christine added that the Cure Inad UK charity was being launched on international Giving Tuesday on the steps of Civic Hall, which is outside the hospital where Zoe was born and also diagnosed with INAD.
INAD is a rare inherited disorder affecting the nerve axons (which are responsible for conducting messages) in the brain and other parts of the body, causing a progressive loss of vision and of physical and mental skills. INAD is caused by an abnormal build-up of substances in the nerves throughout the brain and body, which prevents them working properly.
The Cure Inad UK website can be found here.