Zoe Lightfoot was a healthy baby who was developing normally, but she could not walk by the age of two and had started to lose her coordination and balance.
Zoe was aged two-and-a-half when she was diagnosed with infantile neuroaxonal dystrophy (INAD), which causes a progressive loss of sight and physical and mental skills.
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Since the diagnosis Zoe's condition has gradually deteriorated and she has lost her mobility, her speech and the ability to move her head.
Zoe's parents Christine Hamshere and Steven Lightfoot, of Bramley, know she can see and hear them because she laughs and smiles.
Christine said: "It has been very difficult watching her struggling.
"She is a really brave little girl and we are proud of her. She is amazing."
There are currently believed to be just nine children in the UK diagnosed with the condition, which usually means an affected child dies between the ages of five and 10.
Christine said the condition is so rare that there has previously not been a charity in the UK where families can turn to for support after diagnosis.
Christine and Steven are part of a small team of family and friends who have launched the cureinaduk.org charity
They are hoping businesses will support the charity, which is aimed at providing grants to promote medical research into INAD.
Civic buildings in Leeds were lit up in charity colours of blue and green to support the launch.
Zoe was one of only 19 children worldwide picked for a drug trial.
Since launching a fundraising effort, Christine and Steven have seen people donate more than £28,000 to fund Zoe's treatment in the USA.
The drug trial is helping Zoe but the ultimate aim is to find a cure.
Christine said her family has been helped by charities including Leeds Mencap, Martin House Hospice and Little Hiccups, but there has not been a dedicated UK charity for INAD until now.
Christine said: "When Zoe was diagnosed there was no UK support. INAD is so rare that there is nothing out there to help families.
"There wasn't a UK charity we could turn to that was specific for the condition.
"We want to try to raise money to fund research to find a cure. There is research going on globally at the moment and we want to contribute."
Current research includes gene therapy at Great Ormond Street Hospital, that is progressing to human trial, and the repurposing of existing drugs testing by New York Stem Cell Foundation.
For more information and details on how you can help, go to cureinaduk.org charity
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