Four-year-old Leeds girl with potentially fatal condition cannot travel for drug trial tests due to coronavirus restrictions
Coronavirus travel restrictions meant Zoe Lightfoot of Bramley was unable to travel to America last month for tests during the drug trial, which she has been on for 18-months.
Zoe has infantile neuroaxonal dystrophy (INAD), which usually means an affected child dies between the ages of five and 10.
Since the diagnosis two years ago, Zoe has lost mobility and her speech.
Zoe and her family have been to the Goryeb Children’s Hospital in Morristown, New Jersey in America four times since November 2018 as part of a clinical drugs trial it is hoped will curb her decline.
They were due to return to the hospital for a six-day stay at the end of June and start of July to continue with the Retrotope drug company trial.
But the trip was cancelled and the family is waiting to hear if the drug will now be sent to the UK so the trial can continue.
Arrangements also need to be made for Zoe to undergo medical tests in the UK so she can continue to be part of the trial.
Zoe is one of only 19 children worldwide picked for the trial and since launching a fundraising effort, parents Christine Hamshere and Steven Lightfoot have seen people donate more than £28,000.
The money is paying for Zoe's treatment and is helping charity the INADcure Foundation, which is trying to find a cure for INAD.
Miss Hamshere, who also has a 16-month-old baby son called Alex, said she believes the trial drug is increasing Zoe's life expectancy and is giving her a better quality of life.
Miss Hamshere said Zoe is on the coronavirus shielding list and is staying at home for the foreseeable future.
She said: "It is stressful and worrying and we just want to get this resolved at the earliest opportunity.
"It is quite draining. It is taking over all of our thoughts and what we are doing."
According to the Great Ormond Street Hospital, which specialises in care for children, 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.
Zoe was diagnosed in April 2018 after an MRI brain scan in January that year revealed significant brain damage and cerebellar atrophy.
The part of the brain that affects balance and coordination, speech and swallowing had formed normally as a baby, but then shrivelled.
It causes a progressive loss of vision and of physical and mental skills.
Zoe was born in 2015 and grew up as a normally developing child until the age of around 18 months, when it was questioned why she wasn’t yet walking.
She could stand at furniture but couldn’t take steps without support. At first it was considered to be caused by hypermobile joints, but shortly after Zoe turned two it was apparent that she was developmentally behind and had lost some skills.
Visit the fundraising page at https://www.gofundme.com/zoes-inad-battle-fund
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