A MUM and dad have set up a charity after their daughter was diagnosed with a genetic condition that affects just 160 people across the world.

Sienna Hutchings, from Wimborne, is one of only 15 people in the UK to have Champ1 and was diagnosed shortly after she turned three.

Corfe Castle is set to be illuminated purple on March 20, which is Champ1 awareness day.

Sarah and Scott, Sienna’s parents, were faced with a huge number of unknowns when they received the diagnosis, including being told that she may not ever speak or walk.

However, nearly two years down the line, Sienna, now aged four, can do both, and her parents want to highlight what people with Champ1 can do and provide information and support for parents who are faced with the same situation they were.

Champ1 stands for chromosome alignment maintaining phosphoprotein 1 and the condition is caused by a mutation in the Champ1 gene.

Champ1 UK became a registered charity in December, and the pair are focused on raising awareness of the condition and getting it known in the community.

Bournemouth Echo:

“For anyone who does have that diagnosis, when they go into Google and type Champ1 like we did, you got presented with three or four random scientific papers and not a lot else,” Scott said.

“So finding any information, we're trying to make a lot easier.

“A lot of these families get a diagnosis that says Champ1, [they] ask their paediatrician or their geneticist, what is that? And they get, ‘we don't really know, we've just looked it up online, here are these studies’.

“We want to get that out there so that when someone says, what is Champ1? They can at least tell newly diagnosed people what it is and where they can find the support.”

There is a well established Champ1 charity in the USA, the Champ1 Research Foundation, that the pair work closely with, but they decided to set up the UK charity so they could access grants and funding in this country.

The UK charity is already registered with Eurodis, an organisation championing those with rare diseases in Europe, and is aiming to be added to the NHS website as a support group for those with Champ1.

Plans for the charity include writing a song and releasing a book to help children understand the condition, with a quiz in Wimborne lined up for March 23.

The family are hoping to go to Orlando in October for an international Champ1 conference, where families with Champ1 come together, along with geneticists and researchers studying the condition.

They would like to fundraise to help other families get to the conference.

For more information on the charity, visit their social media pages at Champ1 UK.