Two sisters with an extremely rare health condition have helped their family raise over £11,000 for a care home that helps look after them. 

Eight-year-old Sienna lives at the Chailey Heritage Foundation in Sussex due to her complex physical disabilities, while her sister Isabelle (14) attends part time too.

Both girls have an extremely rare condition called ALG11 known to impact just fifteen people in the entire world, and Isabelle and Siena were only recently diagnosed with the congenital disorder.

Together with their family who live in Headley they remarkably raised almost £12,000 for the Chailey Heritage Foundation, with all their sponsorship matched pound for pound by the headline sponsor, Focus Group, and the team hope to raise even more. 

The charity' s annual fundraiser, Focus 10k, could not take place due to the ongoing coronavirus pandemic, so the fundraising took place in supporters' homes and the Foundation home itself instead.

Eleven members of the Tupper family have walked, cycled and run a total of 111km.

Isabelle walked 100 metres a day for one week while Siena completed some walking and cycling.

ALG11 is a genetic multi-system condition and causes severe epilepsy, learning difficulties and other medical issues.

"It was a hard challenge for both of them and it certainly wasn't easy completing what they did," Sister Lauren, 20, said.

"We are very proud of them both. They enjoy being at Chailey Heritage and the support they receive there is amazing.

"They take part in fun activities which they wouldn't be able to do if they weren't there," she added.

Mother Jenny described the family a little after the fundraiser: "They have delightful personalities and are very happy girls.

"I have two other daughters, Lauren who's 20 and Carys, who is 18, and it obviously came as a shock when we realised that Isabelle was going to have medical problems and disabilities.

"When I fell pregnant with Siena, all the tests were clear so it came as a tremendous shock again to learn that she would also have problems as she grew up.

"It's only recently that we have been able to get a diagnosis for their condition."

Nina Gopal, Chailey’s Head of Fundraising, paid tribute to the Tuppers' incredible fundraising efforts:

"The Tupper family has been amazing, all 11 of them, and we want to say a big thank you from everyone here at Chailey Heritage.

"What they have achieved as a team is tremendous. It's been a great family effort."

To donate to the fundraiser, click here.