Brave Emma is back home for first birthday celebrations after being born with rare condition
- Credit: Nick Butcher
A baby girl who has spent the past year in and out of hospital after being born with a rare genetic condition is back at home with her family in time to celebrate her first birthday today.
Emma Gulliver was diagnosed with Hirschsprung's disease just a week after she was born - a nerve condition which causes serious chronic constipation. Her family's lives were turned upside down when she was then diagnosed with congenital central hypoventilation syndrome (CCHS), which caused her to take shallow breaths and hypoventilate. She had to be transferred to Great Ormond Street Hospital (GOSH) in London for a lifesaving tracheostomy and ventilation.
Emma was transferred back to the Norfolk and Norwich Hospital in June, and was finally allowed back to her Beccles home in September. But, after being admitted to GOSH in November for further surgery, she picked up two major viruses and had to stay in until the start of the year.
Now back at home and doing well, parents Claire and Chris Gulliver along with brothers Isaac, five and Louis, two, are delighted to be celebrating the milestone as a family.
Mrs Gulliver said: 'She's doing well at the moment so we are just enjoying a bit of quality family time and gearing up for her birthday celebrations.
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'Her main condition is life-long so she will be monitored on a ventilator but we are hopeful as she gets older she will only need it at night time.
'She's such a happy girl, she loves attention and smiles. She's a real inspiration.'
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There are thought to be between 50 and 100 people in the UK with CCHS. It means that when Emma is unwell, tired or asleep, her brain doesn't trigger for her to breathe effectively.
She has night care seven days a week, as well as some care during the day.
In honour of Emma's special birthday, Isaac and his classmates at Ravensmere Infant School will be taking part in Great Ormond Street's Bad Hair Day fundraiser today, with pupils encouraged to do something silly with their hair to raise funds for the charity.
Family received help from trust
Throughout her stay at Great Ormond Street Hospital, Emma's family were supported by The Sick Children's Trust, who provided free accommodation so they could be just minutes from her bedside.
Mrs Gulliver said: 'The thought of going to another hospital so far away from our home was very scary. We knew we could be there for months and I worried about how our family would be able to support each other during this extremely difficult time. My husband, Chris, is a businessman, and could not take time off work for months on end, and our little boys needed to stay at home to go to school.
'Thankfully it wasn't long before I was offered a room at Guilford Street House - free 'Home from Home' accommodation run by The Sick Children's Trust. It enabled me to be near Emma so I could be trained in her care and bond with her. It also meant the rest of the family could visit her regularly and her brothers could understand her condition and get to know their little sister better.'
Although the accommodation is provided free, it costs the charity £30 to support a family for one night, and they rely entirely on donations. To find out more visit www.sickchildrenstrust.org