A family from Eastbourne is leading a campaign to raise awareness about cystic fibrosis by posting a YouTube video about their daughter Cerys who was diagnosed with the disease last year.
The video follows 15-month-old Cerys Jones’ progress from birth to the present day and can be viewed by searching online for Cerys’s CF Journey Facebook page.
The footage also outlines details of a straw breathing selfie campaign that people can participate in to help raise funds for the Cystic Fibrosis Trust.
“Cerys was rushed into hospital aged two days old with a blocked bowel condition called meconium ileus,” said Cerys’s dad Steve. “She had an operation to clear the blockage. The diagnosis of cystic fibrosis as the cause of the condition followed later – it was a double hammer blow.
“What most people fail to realise is the huge amount of medical attention and physiotherapy performed by us, her family, that goes into keeping Cerys well.
“Her ongoing regime includes regular hospital visits, routinely taking vitamins and antibiotics and undergoing physiotherapy twice daily, or more frequently if she has a cough, with no days off.”
The family also has to try to avoid risk factors, such as people with heavy colds and warm, moist environments that can harbour pseudomonas bacteria which cause serious infections in people with CF.
“Cerys has a public Facebook page because we wanted to explain to people how full-on and difficult the lifestyle is for a person with cystic fibrosis, and of course for their family too.
“Most people will know that CF is a condition that has something to do with the lungs, but they do not realise the full impact it has on daily life” said Steve.
“We decided to make a video about Cerys’s cystic fibrosis journey, when we came across the straw breathing selfie campaign.
“By breathing through a narrow straw while pinching their nose for approximately 60 seconds, people can experience the sensation that a person living with cystic fibrosis may have to endure, for example, after an intense coughing fit. The idea is for people to take a selfie while trying the straw breathing to show empathy and support for those living with the condition.
“We are asking people to post their selfie online and donate a minimum of £1 by texting BWCF64 and the amount to 70070.”
A song linked to the campaign, is also available to download from iTunes, with all proceeds from downloads going to the CF Trust.
Details of the song by TWF featuring annaJo can be found at www.breathewithme.info and the video of Cerys is at https://www.youtube.com/watch?v=ATb7kt1xXmU