A four-year-old girl has a rare form of skeletal dysplasia, a condition which only one in a million people in the world live with.
Emmie Gizatullin is the size of a nine-month-old, has a cleft palate and club feet, is non-verbal and wears hearing aids and strong glasses.
Despite this, she is a happy little girl who communicates by signing and using a communication device, loves to sing and can shuffle around on her bottom and enjoys using her wheelchair, defying doctors’ expectations.
However, last year Emmie’s family, from Colchester, were devastated to learn that her condition has become inoperable and she is unlikely to live past her 10th birthday.
The family, mum Hannah, 41, dad Marat, 51, and brother Adam, 13, are now fundraising to give Emmie the best quality of life possible by making adaptations to their house to accommodate her needs, as well as physiotherapy and hydrotherapy.
Hannah said: "We don’t know everything that we are going to need for Emmie in the future but we want to be prepared. Right now we would really like to make it possible for her to get in and out of the garden and be able to move around it so that she can play.
"She needs private physiotherapy and hydrotherapy to help with her joint pain and to help her move better. 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 include a lift, adapted bathroom and a room big enough for her specialist bed."
The family has already raised more than £13,000 of their £50,000 of their target due to great support from their friends and community, especially the Bluebells pre-school in West Bergholt attended by Emmie.
The Crown Pub at Wormingford is holding a Christmas with the Choir event on December 23, the family are also holding Emmie’s Christmas Raffle with lots of prizes.
"It means so much to us to have the support of so many people," Hannah added. "Every penny will help us to help Emmie make the most of the precious time she has."
To find out more visit: facebook.com/My-little-sister-Emmie-103648938528020, to donate to Emmie’s fund, visit: www.treeofhope.org.uk/my-little-sister-emmie.
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