Exclusive:'We’re so lucky to still have her': Leeds family marks milestone birthday for daughter with rare disease
A Leeds girl is today celebrating a milestone birthday few doctors thought she would ever see.
On September 11, Zoe Lightfoot turns 10. She will spend the day at West SILC, her school, before marking the occasion with family and friends at home.
Zoe was just two and a half when she was diagnosed with infantile neuroaxonal dystrophy (INAD) – a rare, inherited degenerative condition that robs children of movement, speech and sight. Most affected youngsters die between the ages of five and 10. Only a handful of children in the UK live with the disease.
A few months after her diagnosis in 2018, Zoe’s parents, Christine Hamshere and Steven Lightfoot, took her to America to take part in a drug trial. They made four trips across the Atlantic, bringing the trial drug back to the UK for Zoe to take regularly.
Christine told the Yorkshire Evening Post: “And then that trial folded when they ran out of funds. The drug still exists, and they are still trialling it for other conditions, like Parkinson’s, but not with INAD, unfortunately.”
The setback spurred the family to launch Cure INAD UK in 2021, raising money for research at University College London (UCL) and Great Ormond Street Hospital. Thousands of pounds have since been donated to pioneering gene therapy projects that could one day stop the disease before symptoms take hold.
Christine said: “If they can diagnose children early enough, they can replace the faulty gene with a corrected one, and then there won’t be the loss of skills. It’s going to be life-changing.”
Through the charity, the family also supports others facing the same devastating diagnosis.
“Seek help, seek support from others. You're not alone,” Christine said. “There’s your child growing up, absolutely nothing wrong with them, not a care in the world, doing all normal things, suddenly, they can’t... What’s wrong? Oh, they’ve got this awful condition, and they’re going to lose all their skills and pass away.”
With support form local charities such as Little Hiccups, SNAPS and Bendrigg Trust, which recently invited the family to go sailing. The charity even arranged a special seat for Zoe to enjoy the trip.
Despite her condition, Zoe still finds joy in her daily life at West SILC.
“She has lost a lot of skills, but she is stable and comfortable and happy and engaging in things,” Christine said. “She goes to school full-time, and she enjoys that. And we try and do lots of family things together, make memories, do things we know she’ll enjoy, go outside a lot.”
Although she can no longer sing or tell jokes, her family say her presence is unmistakable.
“When she looks right at you, and you know she’s listening, you know she’s there... if we can get a smile out of her or laugh, it melts our hearts,” Christine said.
“I just want her to remain comfortable, happy, and stable. I want her to feel loved and supported and just have a happy life.
“It’s wonderful that we can do that (celebrate her birthday) together. We’re so lucky to still have her. She’s our world. We love her very much, and we keep her as long as we can.”
Donations to Zoe’s fundraising campaign for INAD research can be made here: justgiving.com/page/zoeis10