Summer ball to be held for 'amazing' Colchester girl who has rare genetic condition
A MIDSUMMER ball will be held for an incredible seven-year-old girl with a life-limiting condition which only affects one in a million people.
Emmie Gizatullin, aged seven, from Colchester, has a rare genetic condition called Kniest Dysplasia.
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.
Mum Hannah said Emmie's condition is 'quite a severe form' and that she cannot have any surgery on the spine.
Emmie's family, which also includes dad Marat and brother Adam, have been fundraising to give Emmie the best quality of life possible by making accessibility adaptations to their house.
Fundraising - (L to R) Sue Tasker, Adam Musa, Hannah, Emmie and Marat Gizatullin at the 2024 Midsummer Ball (Image: Submitted)
The family has held two summer balls at Milsom Hotel and Restaurant's Talbooth in Dedham with last year's event raising £7,380 for Emmie and her family.
This, alongside other donations including free labour from Rose Builder's trades people, meant an accessible bathroom could be completed.
Hannah said: 'Emmie is going to be eight in July, and she is doing really well.
'By the time you are eight you want to wash your hands at the sink and brush your teeth, everything everyone takes for granted every day.
'It makes a huge difference for us that she can be independent. She is amazing us with how well she is.'
Hannah said the family has had to a 'lot of structural change' to their house, with a lift being needed as well as a needed downstairs toilet.
She said the family was looking forward to the event.
She said: 'Emmie goes to the event and parties all night.
'She loves to sing and she gets very excited about it. We normally would not get to go anything so special, it means a lot to us, and we would not be able to raise the money needed for us by ourselves'.
Hannah also made a special mention for Sue Tasker from Milsom who has organised the event since the beginning.
She said: 'In a way Sue from Milsom has changed our lives, and I don't know where we would be without Sue.
'She's incredible."
There are still tickets available to buy at the Talbooth Marquis at https://www.milsomhotels.com/events/summer-charity-ball-25/.
To donate visit https://justgiving.com/campaign/fundraising-for-emmie.
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