Pilates instructor taking on half marathon for Colchester six-year-old with a one in a million life-limiting condition
Rebecca Johnson's hoping the funds she raises can help Emmie Gizatullin who's six and has skeletal dysplasia, a condition that affects only one in a million people worldwide.
A Colchester pilates instructor is taking on the Colchester half marathon for Emmie Gizatullin, aged six, also from Colchester, who 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, 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 spinal instability that is part of her condition has become inoperable and she is unlikely to live past her 10th birthday. Her family, Mum Hannah, 44, Dad Marat, 53, and brother Adam, 15, are now fundraising to give Emmie the best quality of life possible by making adaptations to their house to accommodate her needs, including downstairs bedroom and a wetroom.
‘The wetroom will mean that Emmie will be able to independently access a sink to wash her hands and clean her teeth and also use an Asian style toilet all by herself with privacy, which she currently does not have. At the moment even though she will be 7 this year she uses a potty in the hallway.’
Rebecca Johnson, 42, from Colchester said: ‘My eldest son Henry’s best friend is Adam, Emmie’s brother, so we are often at their house and have got to know the family quite well.’
‘Emmie’s mum Hannah is always so busy cheerfully fundraising that I thought it would be nice to lend a hand and help them make the house adaptations they need. This will be my third Colchester half marathon and it’s always motivating to know I am running for a good cause.’
Hannah said: ‘We don’t know everything that we are going to need for Emmie in the future, but we want to be prepared. 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.’
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.
Tree of Hope Head of Marketing and Family Support Georgina Lowry said: ‘We’re really pleased to be supporting Emmie’s fundraising. We wish Rebecca the best of luck with the half marathon and are here to support however we can.’