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Teen with painful health condition receives Diana Award for community work

PUBLISHED: 13:00 25 August 2018

Eara-Mai at The Diana Awards ceremony. PHOTO: Ezara-Mai Downes

Eara-Mai at The Diana Awards ceremony. PHOTO: Ezara-Mai Downes

Archant

A 14-year-old dancer with a painful health condition has won a prestigious Diana Award.

Ezara-Mai Downes collects an award in 2018. PHOTO: Ezara-Mai DownesEzara-Mai Downes collects an award in 2018. PHOTO: Ezara-Mai Downes

A 14-year-old dancer with a painful health condition has won a prestigious Diana Award.

Ezara-Mai Downes has an extremely rare condition called Juvenile Dermatomyositis (JDM) which affects the muscles and skin and can cause a range of symptoms, the worst of which is extreme muscle pain.

Despite this the Hingham school girl has more achievements under her belt than some adults, the latest of which is receiving a Diana Award.

Now an independent charity, The Diana Award was established in 1999 by the government, who wanted continue Princess Diana’s legacy by establishing a formal way to recognise young people who were going above and beyond in their communities.

Ezara-Mai Downes in 2016 aged 12. Picture: ANTONY KELLYEzara-Mai Downes in 2016 aged 12. Picture: ANTONY KELLY

Ezara-Mai has raised more than £11,000 for Great Ormond Street Hospital (GOSH), who have cared for her condition since her diagnosis.

She has achieved this through a variety of initiatives, including story writing competitions, garden parties and dance events.

Eventually she would like to raise £100,000 by the year 2025. Ezara-Mai has also voiced a video about gene editing for GOSH.

On top of this she is an award-winning dancer, and has picked up numerous prizes under the tuition of the Miller Dance Studios in Norwich.

Ezara-Mai Downes in 2016 aged 12. Pictured with her mum Lorna. Picture: ANTONY KELLYEzara-Mai Downes in 2016 aged 12. Pictured with her mum Lorna. Picture: ANTONY KELLY

This year she won the Latin closed Pro-Am at Brentwood National Competition. Next year Ezara-Mai will co-present The Diana Awards.

Ezara-Mai said: “I found the ceremony truly memorable and I have been inspired to continue to contribute to such good causes.”

A statement from The Diana Award said: “Ezara-Mai is already creating a legacy for children, young people and their families from across the world who are experiencing genetic illness, like her.

“Through her work with the GOSH Youth Forum she has worked with geneticists, media companies and the NHS to raise awareness about how rare illnesses like hers are created and can be treated.

Ezara-Mai Downes in 2016 aged 12. Picture: ANTONY KELLYEzara-Mai Downes in 2016 aged 12. Picture: ANTONY KELLY

“Described as a ‘power house of a young lady’ everyone is proud to be part of ‘Team Ezara’ and her mission to improve the lives of others.”

Ezara-Mai received the award alongside 113 other young people from across London and the south east of the country, with special guests including Leslie Morgan OBE.

Next on Ezara-Mai’s calender is a Latin dancing fundraiser for GOSH at Wymondham Central Hall on October 6.

To donate visit www.justgiving.com/fundraising/latinlive-ezara-mai

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