Cure INAD: Leeds girl with rare condition 'deteriorating' as family raise cash to find a cure

Zoe Lightfoot was two years old when she was diagnosed with infantile neuroaxonal dystrophy (INAD) - a rare degenerative disease which causes loss of sight, physical movement and cognitive skills. Spotting that there was no UK-based charity where families could receive support, parents Christine Hamshere and Steven Lightfoot of Bramley decided to launch their own in 2021.

The charity celebrated its first anniversary on November 29 having raised enough money to give its first grant to University College London (UCL) and Great Ormond Street Hospital to fund its INAD research.

Now aged seven, Zoe’s condition has deteriorated since the launch of the charity. Christine described her condition as fairly stable despite fighting multiple illnesses including Covid, shingles and chest infections this past year.

Christine told the Yorkshire Evening Post: “I look back at the picture of the launch and I think there are probably slightly less reactions from her – we know she is still deteriorating. Underneath everything, she is still strong.

“When you think about what she is going through, you have to do everything you can for her – because she is reliant on you for everything. No matter how tired you might be, and struggling with it, it is for her and she needs you to be strong and do everything you can for her.

"We are more than happy to do everything we can to keep her strong in hope that the cure that they are working on is available in time for her to take advantage of it.”

The grant given to UCL has been raised through multiple fundraisers. Christine said: “Within this first year, we have had some incredible people supporting us, doing quite extreme things for the cause.”

Among these individuals is family friend Ben Manuja who has been raising money by cycling for more than 200 days across Africa – with nothing but a tent and a bike. He cycles for eight hours a day and despite facing challenges, including faults with his bike meaning he had to walk some sections, he is determined to finish his challenge of reaching Cape Town – which will take his total number of miles to 9,000.

Christine added: “He has been to some incredible places even biking with elephants. I have been watching his journey through the pictures on his page. It’s absolutely incredible and we are very grateful to him.”

Ben isn’t the only one who has taken on difficult challenges to raise money for the cause – a man with a heart condition marched a marathon in Manchester and a woman who has never run before completed a double marathon in two days. The charity also held a raffle with unique prizes to raise funds, including a family portrait painting by artist Scott Chaney and a Brownlee Brothers signed top.

Christine said that now the charity is established, it is looking for more businesses to get behind it – having already received £500 from Direct Line and support from Charlotte's Boutique in Leeds.