'We feel it is increasing the time we have got with her'

The parents of a four-year-old  Leeds girl who suffers from a rare and potentially fatal condition are continuing fundraising after a drug trial in America was extended for  another year.

Zoe Lightfoot

Zoe Lightfoot of Bramley 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.

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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 drugs trial it is hoped will curb her decline.

She was one of only 15 children worldwide picked for the trial and since launching a fundraising effort, parents Christine Hamshere and Steven Lightfoot have seen people donate more than £26,000 towards the treatment with the company Retrotope’s drug in New Jersey.

The latest week-long trip- to the hospital in New Jersey was in January when they were told the drug trial has been extended for another year

Miss Hamshere,43, said: "When she was diagnosed and before the trial started she was losing skills rapidly and it has slowed that down.

"She could still say some words and she was still a little bit mobile.

"She could get about and sit and feed herself. She quite quickly lost the ability to speak and lost her mobility.

"When the trial started there was some initial improvement and then there has been a very slow regression after that.

"It (the drug trial) has not stopped it but we feel it is increasing the time we have got with her and is giving her a better quality of life."

Miss Hamshere, who also has a one-year-old son called Alex, added: "Although she struggles she has got a good awareness of what is going on around her.

"If something amuses her she is there with a big smile across her face and a laugh.

"Her little brother does his best to make her laugh. He is really intrigued by her."

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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