02 Nov Christmas fundraising events for Colchester girl with a one in a million life-limiting condition
Emmie Gizatullin, aged four, from Colchester has a rare form of skeletal dysplasia, a condition which only one in a million people in the world live with.
She 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 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 with Happy Sounds Community Choir to help raise funds for the family after the landlords saw their banner at a recent event.
The family are also holding Emmie’s Christmas Raffle with prizes including a photography session, hampers, wine, beauty products, chocolate, toys Christmas items and much more.
‘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.’
The family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Emmie with healthcare needs and provides charity status to benefit from gift aid, corporate support whilst also providing donor reassurance.
Gill Gibb, Tree of Hope CEO said: ‘It’s great to see Emmie’s family have so much support and we wish them all the best with their fundraising.’
