IT was a moment that changed their lives forever.
When 10-year-old Kira Carrington was diagnosed with a rare and disabling condition, her mother found out that the condition affected her own health as well.
Mother-of-two Hayley Radford is a carrier of a gene that means she is eight times more likely to develop breast cancer.
"When Kira was diagnosed, our lives came crashing down around us," she said.
"Instead of watching her learn new skills and become more independent, we faced the prospect of seeing her become more and more disabled and there was nothing we could do.
"Discovering I had a high risk of getting breast cancer only made things worse."
In the end, the diagnosis was almost a relief as Kira's parents had known something was wrong but did not know what exactly.
Hayley, 38, from Sutton-in-Ashfield, said: "She was born in 2002 and about a year later, when she started to walk, she just used to walk off sideways. As she got older, it started getting worse. It was like she had always just got off a roundabout.
"Finally, in 2006, we saw a specialist in Queen's Medical Centre and she knew straight away.
"We had never heard of it and we just got this piece of information which said it was a severely disabling disease which causes premature death and cancer."
After the diagnosis, Kira's condition did not worsen for a while.
Hayley said: "It wasn't until she was 8 that it really kicked in.
"She is in a wheelchair all the time. Her brain is fine and she is very clever – it is a mobility thing more than anything. She's still a cheeky 10-year-old!"
Unlike other children, Kira has not developed the lung problems that are usually associated with the illness.
And the family have received some better news with the announcement that researchers are beginning a project that could extend Kira's life significantly and protect Hayley from breast cancer.
A team headed by Professor Steve Jackson of the Gurdon Institute is planning to use state-of-the-art genetic technology to test a completely new approach to treating the condition and hereditary breast cancer.
The technique, known as synthetic viability, has already shown promising results in the laboratory with similar conditions. The research is being jointly funded by the A-T Society, a charity dedicated to the condition, and the Thomas Appeal, a charity that works in the field of childhood illnesses.
Hayley said: "Any research is good because the condition is so rare and no one seems to have really bothered with it.
"The A-T Society has been a lifeline for us. They helped us understand the reality of the condition and with their help we are starting to move forward. Now, this project they are funding with the Thomas Appeal means there is a light at the end of the tunnel and real hope for Kira and other children like her."
Professor Jackson said: "A-T is such a complex and devastating condition because people with it lack the protein which plays a major role in ensuring the wellbeing of cells and the DNA they contain.
"We will be using a newly developed cell-culture system and combining this with cutting-edge DNA-sequencing methods to identify ways to correct cellular defects caused by mutations in the gene responsible for A-T. This will potentially open the door to therapeutic approaches for A-T, for hereditary breast cancer and for other inherited conditions."
The total budget for the project is £50,000 and the charity is approaching funders with an interest in medical research in the fields of cancer and neurology.
The A-T Society has a further six medical research projects waiting for support, all of which have potential to improve quality of life for children with A-T or lead to a cure.
And Hayley and her family are actively raising funds to support the A-T Society.
To donate, go to: virginmoneygiving.com/hayleyradford
