Breathe with Cerys to help fund research into cystic fibrosis

(2 Posts)
breathewithme Tue 09-Dec-14 22:12:21

A family from Herstmonceux are 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 Cerys’s progress from birth to the present day and can be viewed at https://www.youtube.com/watch?v=ATb7kt1xXmU
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.

Cystic fibrosis is a life-shortening genetic condition – only half live to celebrate their 40th birthday. It causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation of the lungs.

“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.”

A person living with cystic fibrosis can often appear healthy, but inside it is a different story. Cerys is now 17 months old, a seemingly robust toddler with a sunny disposition.

What most people fail to realise is the huge amount of medical attention and physiotherapy performed by her family, that go 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 have to try to avoid risk factors, such as people with heavy colds and warm, moist environments that can harbour pseudomonas bacteria which can 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 (strawfie) 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 (see example with this article) to show empathy and support for those living with the condition. This year marks the 50th anniversary of the Cystic Fibrosis Trust, so we are trying to go the extra mile to raise awareness and funds to help find a cure.

“We are asking people to post their selfie online and donate a minimum of £1.00 by texting BWCF64 £(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. The music video of the song has recently reached the semi-final of the prestigious UK Songwriting Contest.

Details of the song by TWF featuring annaJo can be found at www.breathewithme.info and donations can also be made on the website, by clicking the ‘Donate’ button on the welcome page.

breathewithme Sat 13-Dec-14 12:01:01

Thanks Mumsnet for providing an excellent way for people to share important campaigns like the Breathe With Me Strawfie Challenge.

Please take a moment in the busy lead-up to Christmas to post your own 'Strawfie' on Faceboom/Twitter (see #strawfie or www.breathewithme.info) and donate £1.00 by texting BWCF64 £(amount) to 70070.

People living with cystic fibrosis have to spend several hours every day doing their treatments and physiotherapy, so if you can find the time to help it will be greatly appreciated.

Thank you from TWF (Together We Fight) x

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