Colchester family fundraise for youngster with rare bone disorder

But when Hannah and Marat Gizatullin were ushered into a side room shortly after the procedure at Colchester General Hospital, they knew something was not right. 

They were told their baby was suffering from kniest dysplasia, an extremely rare bone condition which can also result in spinal cord compression.

Mrs Gizatullin, now 43, was in Addenbrookes Hospital seven weeks before she was due to give birth, and during that time, was told there was every chance she might be leaving the hospital without a baby.

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After Emmie, now five, was born, her parents were determined she would live her life to the full.

With Emmie's disability being so rare it has meant long drives to countless hospital appointments, and trawling through the internet for prohibitively expensive specialist equipment.

But huge efforts from Emmie’s mum and dad, added to the generosity of members of the public, have meant Emmie is coming as close as she can to leading a normal life for a five-year-old.

Fighter – Emmie Gizatullin has defied the predictions of a lot of experts (Image: Hannah Gizatullin)

Most of the £30,000 which the Gizatullin’s have raised over the years has gone to adapting their Stanway home for Emmie, who is wheelchair bound and needs special equipment to move around and complete day-to-day activities.

Emmie’s mum, Hannah, said: “Everything is extremely expensive, but the last phase of our work is an upstairs wheelchair-accessible bathroom.

“Long term, if she can’t shuffle around on her bottom, she will have use of the upstairs bathroom by using a floor lift.”

Emmie also has her older half-brother, Adam, to offer fraternal support, even if he does jokingly refer to her as “my annoying little sister.”

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June will see another fundraising event come together in the form of a summer ball at Talbooth Marquee.

Early details are still being put together, but it is likely to involve an auction, a raffle, and other activities as part of the evening, where money can be donated for the last of the specialist equipment needed for Emmie to live more independently.

The full story of Emmie’s living with kniest dysplasia can be found at www.treeofhope.org.uk/my-little-sister-emmie, where donations can also be made towards to any fundraisers.