Northamptonshire rallies round for Lizzie, aged 9, who has a life-limiting illness

Businesses and members of the public are pushing a special fundraising total for a Northamptonshire girl close to its target.

Saturday, 13th August 2016, 6:00 am
Updated Thursday, 25th August 2016, 7:07 pm

The fund is for essential equipment for a nine-year-old called Lizzie who was 10 months ago diagnosed with a rare life-limiting condition called ‘A-T’ (ataxia telangiectasia).

This affects the co-ordination of sufferers, leaving them with wobbly legs, slurred speech, it affects their immune systems and Lizzie is prone to chest infections which are kept at bay currently by an anti biotic three days a week.

However, it will eventually affect her movement, speech and vision.

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Debi Hanley, who has organised an appeal,said: “As you can imagine her family are devestated as they come to terms with this prognosis but want to provide the best possible positive life experiences for her.

“There is an average life expectancy of 24 to 25 years for sufferers of this condition and Lizzie won’t be able to have children.

“With modern research, A-T sufferers have lived into their 40’s and 50s, and we are hopeful for this for Lizzie.”

Her parents are both carriers of A-T, but they had absolutely no idea they were carriers.

As her illness develops, Lizzie will need many items of equipment just to help her get through each day.

She will eventually need an electric bed to help her as she uses so much energy just getting up.

She will also need things like walkers as she grows, and an electric wheelchair.

Debi said: “There is no knowing how Lizzie’s illness will develop, and what we want to do is to raise funds to allow Lizzie to enjoy her life in the best possible way for as long as she can.

“Some of the things we want to do are to make over her garden to provide her with a safe space, buy her the equipment she needs to make her life easier, and to raise funds for Lizzie to visit places and have experiences whilst she is still able to.”

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