How GOSH helped us on our cystic fibrosis journey

Emily’s mum, Juliet, tells us about the challenges of caring for two children with cystic fibrosis (CF) and how Great Ormond Street Hospital (GOSH) has provided invaluable support on her family’s difficult journey.

A heart-breaking diagnosis

Juliet’s newborn baby, Emily, was diagnosed with CF through a heel prick test. The condition means that Emily has too much phlegm in her lungs, which affects her ability to breathe. It makes her very chesty and causes infections. 

“It was devastating to hear that this precious, brand-new, little person who had entered our lives had anything that could be presumed as wrong,” says Juliet.

“Our goal all the time is to clear Emily’s lungs and airways. And she’s also had trouble putting on weight – which is very typical of children with CF – because she lacks an enzyme that means her body can’t absorb fat naturally.”

Emily’s younger brother, Luke, also has CF. The condition presents itself differently in each of the children, and the care is specific to their needs.

“With Luke, we were quicker and more aggressive,” says Juliet. “I think that was because we were more confident about how to manage it and communicate with professionals about it.” 

Emily supports Luke 

As challenging as it is to have two children with CF, Juliet says it’s touching to see the strong bond between them.

“Emily watches over Luke, advises him on certain things and is acutely aware of his health as well as her own,” says Juliet. “I know that as they get older they will continue to look after each other, because they know what it feels like to have this condition.

“CF is part of our everyday lives Infection control, medication, physio, appointments – it’s just what we do. 

“We’ve had some really sad moments, where Emily’s said: 'I don’t want this'. I wish I could tell her I could take it away. But we’ll discuss how she’s feeling and ensure the condition doesn’t overwhelm our lives.”

Fun on the respiratory ward

Emily gets excited about coming to Badger Ward – the hospital’s respiratory ward – because she gets one-on-one time with her mum or dad.

“She’s also very close to Lizzie, the play specialist on the ward,” says Juliet. “Emily calls Lizzie her twin because they have curly hair and they’re both crazy! 

"She’s been on this journey with Emily, and Emily sees Lizzie as a safe pair of hands and a friend.”

Emily playing in a playground

How GOSH have helped

“We couldn’t have survived without GOSH and our multidisciplinary team,” says Juliet. “What’s made it bearable for us is that the staff know Emily as a person. They know she loves sparkly things, likes to wear cool shoes, and went to a party at the weekend. Having people who can walk that journey beside you is so important.

“When you’re a parent with a seriously ill child, you can easily isolate yourself. But if you’re open to connecting with the hospital’s support services, and the teams and other families you come across, it can help to alleviate some of that burden.”

Juliet says that the family is determined to approach CF Emily and Luke’s condition as positively as possible. “I hope that Emily will achieve anything and everything that she’s ever wanted.

"I never want there to be a moment where we say: ‘We couldn’t do that because of CF.’”

Make a difference

To support children like Emily, you could take part in a fundraising event or make a donation below. A better future for seriously ill children starts with you.

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