Parents of little girl with extremely rare condition launch charity to fund research

Two parents from Leeds who have watched their little girl gradually lose her physical and mental skills have launched a new charity in the hope of finding a cure for her rare disease.

Six-year-old Zoe Lightfoot is thought to be one of only nine children in the UK with Infantile Neuroaxonal Distrophy - or INAD. Because it's so rare, there's little funding for research, but Zoe's parents want to help change that.

Zoe's parents Christine Hamshere and Steven Lightfoot have launched the charity Cure INAD UK to fund research and offer support to other families - there has not been a dedicated UK charity for INAD until now.

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 a specialist children’s hospital in New Jersey in America.

What is Infantile Neuroaxonal Dystrophy?

Infantile Neuroaxonal Dystrophy is a disorder that primarily affects the nervous system. Children with Infantile Neuroaxonal Dystrophy typically do not have any symptoms at birth, but between the ages of about 6 and 18 months they begin to experience delays in acquiring new motor and intellectual skills, such as crawling or beginning to speak.

Eventually they lose previously acquired skills (developmental regression)

In some cases, signs and symptoms of Infantile Neuroaxonal Dystrophy first appear later in childhood or during the teenage years and progress more slowly.

  • If you would like more information about INAD - you can visit https://www.cureinaduk.org/