ITV News Anglia's Charlie Frost went to meet Emmie.
A mum from Colchester says she is worried 'it will be too late' by the time they have raised enough money to adapt their home for their disabled daughter.
Five-year-old Emmie Gizatullin has extremely rare condition Kniest dysplasia. Only one in a million people are born with the genetic disorder which stops her bones and muscles growing properly.
It affects Emmie's hearing and sight and has left her unable to walk or talk. She also has club feet and a cleft palate.
Despite all of her challenges Emmie is full of energy. She is learning sign language, loves playing with her big brother Adam and is speedy in her wheelchair.
At the start of September, like millions of other children across the country, she started school. For most five-year-old's it's a big milestone, but for Emmie it's even more significant.
"We knew something wasn't quite right from the very first scan, the 12 week scan. They didn't know what it was but they could tell something wasn't right.
"We were very strongly encouraged not to continue with the pregnancy, but for us we decided it was really important to, we wanted to," said Emmie's mum Hannah Gizatullin.
"I'm very nervous about her starting school, but I'm also excited because she's definitely ready. She's very excited."
Emmie defies the odds stacked against her every day, bringing joy to everyone she meets and even her 13 year old brother Adam admits she's lovely.
"She's very cute, but obviously she can be quite annoying, but she's my little sister so she's always going to be!"
Adam and Emmie have such a strong bond, he too is supporting his parents fight to adapt their home to meet Emmie's needs.
"We need to do it because we want her to have the best life possible."
Two years ago, Emmie's family were dealt the devastating blow that Emmie isn't expected to live past her 10th birthday.
Depsite their daughter's resilience, her condition will deteriorate because her skeleton is pressing down on her spinal cord. Without surgery she will likely become paralysed and potentially lose her sight.
But doctor's believe the operation is too much of a risk to Emmie's health and won't perform it.
Hannah said: "There's part of us that thought, you know we're really pleased that no one's going to be cutting her open and messing around with her, particularly as it's so risky.
"But, obviously that was very difficult to deal with. She's five now and Great Ormond Street have said probably 10 years is her life expectancy. So that's quite hard to deal with."
Now Emmie's family are focused on making sure she lives the best possible life she can with the time they have left together.
To do that, they need to adapt their home, because at the moment Emmie cannot wash her hands on her own, climb the stairs, go into the garden or even get on the sofa.
Hannah said: "I want Emmie to have everything that she is going to need to help her to stay strong and keep moving. I also don't want her to struggle to do basic things when there are adaptions and aids that can help her."
"Even though there are things she can do now, potentially she won't be able to in the future, so 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 we can play together."
Emmie's parents began working with Essex County Council, getting an Occupational Therapy assessment to decide what adaptions they needed in 2020.
The plans include a lift, an extension so Emmie is more easily to move around in her wheelchair, something she will become more reliant on. Room for a specialist bed for her, a wet room so she is able to use the sink and shower more independently and a wheelchair access door and ramp so she can get in and out of their house.
But, it is very expensive, and Hannah says the costs keep rising. The current estimate is £100,000.
The family have been awarded £30,000 by Colchester Borough Council through the Disabled Facilities Grant. On top of that, they have also fundraised another £30,000.
They were hoping they would also be eligible for a £30,000 loan for low income families with no savings from Colchester Borough Council. But the family say they aren't eligible because their fundraising counts as savings.
Hannah said: "People often say, 'But you know the Council will provide because she's disabled,' well, the Council only have a pot of £30,000 which hasn't changed in decades. So, whereas once it would have paid for everything, today it's not even close to paying for everything we need.
"As it stands, we are about £40,000 off what we need, which is such a lot of money. And sometimes I just feel really down because I think we'll never get there. And it it feels like by the time we get there, it will be too late.
"And, you know, it's really frustrating because I don't want to be spending this time constantly fundraising. And times are so hard for people, it's very difficult asking people for money all the time. But then equally, she's my daughter and I just want her to have the life she deserves."
Hannah is also frustrated because despite having some of the money, work can't start until they have it all.
So, they keep fundraising because they want to give Emmie the best chance at being their bright, beautiful daughter and little sister for as long as possible.
A spokesperson for Colchester Borough Council said:
“We have been working closely with Emmie’s family and Essex County Council to identify and ensure the complex adaptations Emmie needs at home are approved and installed.
“The council has additional discretionary funds of up to £30,000 available for eligible applications, on top of the mandatory Disabled Facilities Grant of £30,000, which is set in legislation to help families with complex adaptations such as these.
“We are now close to agreeing a schedule of works that will enable the application to progress and the work to begin, and we will continue to advise and support the family throughout, until the project is completed.”
Find out more about Emmie's family's fundraising efforts here.
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