Colchester family aiming to raise money to support four year old with life limiting condition
Emma Gizatullin suffers from a rare genetic condition that affects one in a million people
A family in Colchester are hoping to raise money to support their four year old daughter who is suffering from a rare, life-limiting condition that affects just one in a million people around the world.
Emmie Gizatullin has skeletal dysplasia, which significantly hinders her mobility, her ability to see and communicate and restricts the type of food she can eat.
Hannah Gizatullin, her mother, explains the impacts of Emmie's condition: "It affects every part of her body. She's got severe sight and hearing loss. She cannot walk. She also has a cleft palette that cannot be repaired so she cannot talk, and can only eat certain foods otherwise it will choke her."
The family were told that the condition was inoperable and that it was unlikely that she would like past ten years of age. So then the family decided to make adaptations around their home to help improve her quality of life.
Hannah says these adaptations are quite expensive: "What Emmie needs is a lift to be able to go upstairs, at the moment we have to carry her up and down. She also needs a bathroom specifically for her so that she can undertake self-care independently. And she requires a bedroom for her to have a specialist bed that she needs.
"Everybody loves Emmie, she's so cheeky and funny. She's very bossy and loves telling people what they should be doing. Even though she can't speak she communicates clearly through British Sign Language. She has got a great sense of humour and wherever she goes, she makes friends."
The family have already raised a small portion of the funds required, through the Tree of Hope foundation, which has gone towards adapting their garden so that Emmie can play in it. They still have a long way to go and have created a Christmas raffle that people can sign up for. The Crown pub in Wormingford are hosting a Christmas carol event, the proceeds of which will go towards helping Emmie.
They also want to undertake another campaign to raise money. " Our house is on a busy, prominent road. So what we'd really like to do is to have a Christmas lights show, to involve the community and celebrate and promote Emmie and raise some money", Mrs Gizatullin says
"So at the moment we're doing a shout-out for people to donate lights so we can do this", she adds.