The family and friends of a girl in Sutton who was born with an extremely rare genetic condition are hoping to crowdfund specialist treatment for her.

Violet turned two years old in June.

She was born in complex and difficult circumstances during which her mother Anna feared for her daughter's life when Violet stopped breathing. Since then her health problems have persisted.

Eventually, after what Anna described as "countless appointments, Xrays, MRIs and blood tests", they received a diagnosis.

"We then got back her genetic results and to say we were shocked is an understatement," she said. "Violet has a pathogenic variation of the HNRNPH2 gene, a condition that was only discovered in 2016 and there are only just over 100 known cases of it globally."

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The condition is very debilitating physically, and means Violet may never be able walk or communicate verbally.

A foundation called the Yellow Brick Road has helped put her family in touch with others impact by the condition. Meanwhile, Violet has fortnightly physiotherapy and uses specialist equipment such as standing frames every day, but her parents are now pulling for more specialist treatment that can improve her daily life and future chances.

So rare is Violet's condition, in fact, that effective treatment can be extremely hard to come by.

Anna and her partner now hope to raise the money for intensive therapies session next year with the NAPA centre in the US.

"It's an extremely expensive programme which adds up to around $7500 not including travel and accommodation," she told the Sutton Guardian. "Finances have been very difficult for us since Violet was born," she added, pointing out that, with her spouse on a visa, government support during Covid-19 has not been forthcoming. "Throughout lockdown, I was caring for Violet and ensuring she did her daily exercises, whilst working from home. This put enormous stress on me," Anna said.

"We would like to reach out to our community to assist, no matter how small the donation, or share with friends and family," she added.

Click here to view their fundraiser for Violet.