Artist offers family portrait to fundraise for cure of rare condition affecting Bramley youngster

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Scott Chaney created the murals a Rodley Nature Reserve last year.

The professional artist behind the colourful murals at Rodley Nature Reserve is offering to paint a family portrait to raise money for a rare condition which has affected a Bramley youngster.

West Leeds-based Scott Chaney has offered to paint a 50x60cm canvas of family or pet (from a photo) to help raise money for Cure INAD UK. It’s a £2.50 donation on this website to enter the raffle, or five entries for £10.

One of Mr Chaney’s paintings at Rodley Nature Reserve.

The money raised will be used to help fund research to find a cure for Infantile Neuro Axonal Dystrophy (INAD), a rare genetic condition, where affected children have a life expectancy of five to 10 years.

Mr Chaney has been inspired by Bramley girl Zoe Lightfoot, who has the rare neurological condition which affects only one in a million children which has left the six-year-old unable to speak or stand, and she struggles to swallow.

A charity to help find funding towards a cure was launched on the steps of Leeds Civic Hall last year. Photo: John Baron

Mum Christine Hamshere thanked Mr Chaney for his support and said the family was committed to funding continued research at UCL and Great Ormond Street Hospital to help find a cure for INAD. She said: “We have agreed to fund ongoing research. We need to raise another £2,000 to enable them to complete their INAD bio-marker work.

“We also spoke to a research team in Oxford that are keen to prove the direct link between INAD and Parkinsons. If they can prove the link and convince the Parkinsons reseachers they already work with there is real hope we can access funding for Parkinsons in the future. Sometimes studying the rare diseases can help to unlock scientific breakthroughs for more common conditions and diseases. INAD is already referred to as childhood Parkinsons.

“Zoe is doing ok, she is fairly stable. This year she has battled covid, shingles and a chest infection. She bravely fought them off, our superstar!”

The family, who live on Moorland View, last year launched the national Cure INAD UK charity to fundraise for more research and finding a cure for the condition.

Ticket sales will end on Monday, 26 September, and draw will take place on Tuesday, 27 September. More details here.

Zoe, pictured when she was younger.

About INAD

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, causing a progressive loss of vision and of physical and mental skills. INAD is caused by an abnormal build-up of substances in the nerves throughout the brain and body, which prevents them working properly.

The Cure Inad UK website can be found here.

Follow WLD‘s ongoing coverage of Zoe and her condition here.

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