'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 LightfootZoe Lightfoot
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.

Hide Ad
Hide Ad

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.

Hide Ad
Hide Ad

"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."

Hide Ad
Hide Ad

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.

Hide Ad
Hide Ad

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.

Hide Ad
Hide Ad

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

Editor’s note: first and foremost - and rarely have I written down these words with more sincerity - I hope this finds you well.

Almost certainly you are here because you value the quality and the integrity of the journalism produced by The Yorkshire Post’s journalists - almost all of which live alongside you in Yorkshire, spending the wages they earn with Yorkshire businesses - who last year took this title to the industry watchdog’s Most Trusted Newspaper in Britain accolade.

Hide Ad
Hide Ad

And that is why I must make an urgent request of you: as advertising revenue declines, your support becomes evermore crucial to the maintenance of the journalistic standards expected of The Yorkshire Post. If you can, safely, please buy a paper or take up a subscription. We want to continue to make you proud of Yorkshire’s National Newspaper but we are going to need your help.

Postal subscription copies can be ordered by calling 0330 4030066 or by emailing [email protected]. Vouchers, to be exchanged at retail sales outlets - our newsagents need you, too - can be subscribed to by contacting subscriptions on 0330 1235950 or by visiting www.localsubsplus.co.uk where you should select The Yorkshire Post from the list of titles available.

If you want to help right now, download our tablet app from the App / Play Stores. Every contribution you make helps to provide this county with the best regional journalism in the country.

Sincerely. Thank you.

James Mitchinson