A WOMAN from Colchester is taking on a gruelling half marathon to raise funds for a six-year-old girl who doctors believe will not live past her 10th birthday.

Colchester Pilates instructor Rebecca Johnson, 42, is running the Colchester Half Marathon for Emmie Gizatullin, who lives with a rare form of skeletal dysplasia.

Despite the condition - which affects only one in a million people worldwide and has led to Emmie having a cleft palate and club feet - Emmie is a cheerful little girl.

She has a love for singing, is able to move about by shuffling on her bottom or by using her wheelchair and communicates by signing and a communication device.

In 2020, Emmie's family found out the spinal instability linked to her disorder had become inoperable and doctors now predict the youngster likely won't live past her 10th birthday.

Her family – parents Hannah, 44, and Marat, 53, and brother Adam, 15 – are now fundraising to improve their home to better address Emmie's needs.

This includes installing a downstairs bedroom and a wet-room to "make life easier and more comfortable" for Emmie, who uses strong glasses and has hearing aids.

Hannah said: "We don’t know everything we are going to need for Emmie in the future, but we want to be prepared.

"Without the surgeries which are considered too dangerous by her medical team, she will likely lose use of her limbs and potentially also her sight.

"Our main focus is raising money to adapt our house to make life easier and more comfortable for her.

‘She is an incredible little girl who really makes the most of life in spite of her difficulties. She loves school and going to Rainbows, and playing wheelchair basketball and football."

Eager to do her bit in helping Emmie's family raise enough money to fund the transformation, friend Rebecca is now preparing to pound the pavements of Colchester.

She said: "My eldest son Henry’s best friend is Adam, Emmie’s brother, so we are often at their house and have got to know the family quite well."

"Emmie’s mum Hannah is always so busy cheerfully fundraising that I thought it would be nice to lend a hand and help them make the house adaptations they need.

"This will be my third Colchester Half Marathon and it’s always motivating to know I am running for a good cause."

Hannah is grateful for the support of Rebecca.

She added: "It means so much to us to have the support of so many people.

"Every penny will help us to help Emmie make the most of the precious time she has."

Children's charity Tree of Hope is also supporting Emmie's family.

Head of marketing and family support, Georgina Lowry, said: "We wish Rebecca the best of luck with the half marathon and are here to support however we can."

Supporters can help by sponsoring Rebecca's marathon run, or contributing directly via Emmie's funding page on the Tree of Hope’s website.

To donate visit justgiving.com/fundraising/posturepilates or treeofhope.org.uk/my-little-sister-emmie.