She is the picture perfect baby, bright eyed and always smiling.

When Rosie Le Sueur was born, her parents were thrilled to have a beautiful baby girl after two healthy boys.

But what they didn’t know at the time was that Rosie has cystic fibrosis, an invisible, life limiting, genetic condition.

Her mother Claire says it was a huge shock for her and her husband, who live in Poole, as neither of them knew they were carriers of the faulty gene.

“It was a normal pregnancy. My 20 week scan showed she was growing well.

“I had a natural labour and everything was fine – she looked absolutely perfect.

“After five days they do a heel prick test to check for certain conditions and I thought no more of it. But then three weeks after she was born, I had a phone call from the paediatric department.

“They wouldn’t tell me anything over the phone, but said I needed to come into hospital as soon as possible regarding the results from the test.

“I was immediately worried as I thought something must be wrong. When we got to the hospital they said there was no easy way of breaking the news and that it would probably be the worst day of our lives, and then they told us she had cystic fibrosis.”

Claire says neither of them knew much about the condition and were both completely unaware that they were carriers.

“As a carrier you have no symptoms at all. It means our boys may be carriers or they might not have it at all. We were absolutely devastated – it was a complete shock.

“But Rosie is lucky to be born now, as 50 years ago they died as babies or young children. Treatments have progressed so much that now they say that 50 per cent of people with CF can live until they are 40.

“It was hard at first because people were congratulating me on the birth of my new baby girl and then in the next breath I had to tell them she had this disease.

“Many people didn’t know anything about it and because it is invisible – you wouldn’t know by looking at her.

“It affects her digestion so she needs to have supplements and she is more susceptible to catching things.

“She has been on and off different antibiotics for treatment of a staph infection and was in hospital for eight days last month.

“She also has to do physiotherapy twice a day and wear a mask to strengthen her lungs.

“But everyone who meets Rosie, who is now five months old, is smitten.

“The doctors are always commenting that she never stops smiling. She is a very happy baby and her two big brothers adore her.”

Claire is now keen to raise awareness of the condition and is organising a charity sale for The Cystic Fibrosis Trust next month.

After advertising for donations on Facebook, she had an amazing response.

Her room is now packed with boxes of children’s clothes, toys and books.

Claire adds: “There will be lots going on at the sale, apart from loads of bargains including a cake stall, tea and coffee, face painting and my husband, who plays for the Bournemouth Carnival band, will be dressing up as Spiderman.”

The Nearly New Sale for Children and Babies will be held at Longfleet Baptist Church in Wimborne Road, Poole on May 16 from 10am to 12.30pm.

  • If you can’t make the sale, but would like to support Claire, visit http: /uk.virginmoneygiving.com/ClairesCFTrustSale l