Emmie Gizatullin, who’s just two and a half years old, was born with a one in a million genetic condition called Kniest Dysplasia, the rarest form of dwarfism that affects fewer than 150 people worldwide.
The toddler, from Colchester, Essex, went into total isolation with her mum Hannah, 40, and her brother Adam, 11, earlier this week to stay safe from coronavirus.
Her mum Hannah has shared a powerful photo of Emmie waving to her dad from behind a window to raise awareness of the importance of self-isolation and ask people to stay home for her.
Emmie is very vulnerable to infections and illnesses, while she also struggles with breathing – so any virus that affects the lungs, such as Covid-19, could be fatal, as she cannot be intubated and put onto a life-saving ventilator because her windpipe is too small.
Her father Marat, 49, is a fork lift driver and is still required to go to work – so the family decided it would be safest to isolate from him at Hannah’s mothers house until things are back to normal.
But the loving dad still visits his family each morning by waving and blowing kisses through the window at a safe distance – something that Emmie looks forward to every day.
Stay-at-home-mum Hannah said: ‘I knew Emmie’s condition would make her very vulnerable at this time.
‘She been admitted to hospital three times in four months with simple illnesses such as croup, chest infection and an ear infection, so the slightest illness can make her very poorly.
‘She cannot be intubated as her windpipe is too small, so if she were to contract Covid-19 it could kill her because she could not be put onto a ventilator.
‘I knew we had to do everything we could to keep her safe. We were self-isolating at home with Marat for one week but he was still going to work.
‘It was making me very anxious. So Emmie, Adam and I moved in with my mum just over a week ago.
‘Marat is at our home and visits every morning by waving through the window at a distance.
‘I captured this moment between them and thought it was very special. Despite terrible obstacles there is still joy.
‘Everyone has to do their bit to protect the vulnerable in our society.
‘We are hating being apart and it hurts for Marat not to be with us, but we know we must do whatever it takes to protect Emmie.
‘She doesn’t understand what is going on but even with the brief visits, she is so happy and overjoyed to see her daddy.
‘You have to take all the smallest glimpses of happiness you can to get through these difficult times.’
Three months after being born, Emmie was diagnosed with Kniest Dysplasia – a one in a million genetic disorder that affects bone growth and causes dwarfism, skeletal abnormalities and creates problems with vision and hearing.
Emmie has severe sight and hearing loss, cannot stand and uses a wheelchair for mobility, as she has club feet and short, bowed legs.
Due to a cleft palate that could not be repaired, Emmie communicates through sign language.
And despite being nearly three, Emmie’s condition means she can currently only fit into clothes designed for six-month-old babies.
Her parents said initially they were warned that Emmie might have Down’s syndrome, and at each scan were given more bad news – such as her having a small brain, heart defects, brittle bones and dwarfism.
Hannah claims doctors even pressured them into having a termination – but the pair were adamant on keeping their baby, as they already ‘loved and wanted her no matter what’.
Amazingly, Emmie grew stronger every day while in the NICU and went home after four weeks of intensive care.
Hannah said: ‘It was hard as I had no idea if she was even going to survive being born.
‘Although doctors said she would look strange, Emmie was the most beautiful baby girl I had ever seen and had the biggest brown eyes.
‘Despite all the challenges, she has she is such a happy and cheeky girl.
‘She is very bright and uses sign language beautifully. She absolutely loves her collection of books and puzzles.
‘When we go out she always makes new friends, as she gets so much attention because she is so cute and friendly. She waves at everyone she sees.
‘We love her so much and will do everything we can to keep her safe during this time.
‘Everyone needs to do their bit and look after each other by staying at home.’
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