News
Summer ball to raise money for Colchester girl, 5, fighting life-limiting condition
10 May 2023
A summer ball will be held at Milsom Hotel and Restaurant’s Talbooth on Friday June 16 to raise funds for a Colchester five-year-old life-limiting condition.
Emmie Gizatullin, aged five, 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.
In 2020, 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, 43, Dad Marat, 52, and brother Adam, 14, 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.
Tickets for the ball cost £80 and include a three-course dinner, a DJ and a raffle with prizes including an overnight spa break and the loan of a BMW for a week. Dress is black tie – or guests are invited to wear Emmie’s favourite colour, pink.
‘We are so grateful to Sue for arranging this – it’s not something we would be able to do ourselves and we are so excited about attending – Emmie in particular can’t wait!’
‘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 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.’
‘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.’
Emmie's Mum
The family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Emmie with healthcare needs where the NHS can’t support 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 and this fabulous event!’
To find out more about the ball, buy a ticket or donate a raffle prize, email sue.tasker@pressi.co.uk
To donate to Emmie’s fund, visit https://www.treeofhope.org.uk/my-little-sister-emmie
