Video of Herstmonceux toddler’s brave battle with condition to raise awareness

Cerys Jones
Cerys Jones

An emotional video documenting a toddler’s progress after she was diagnosed with a life-limiting condition has been uploaded on to YouTube by her family in a bid to raise awareness of the illness.

Cerys Jones, 15 months old, from Herstmonceux, was diagnosed with cystic fibrosis shortly after her birth last year. She was rushed to the Royal Alexandra Children’s Hospital, Brighton, at just two days old after a health worker noticed she had a distended abdomen.

Dad Steve said: “Cerys was rushed to hospital with a blocked bowel condition called meconium ileus. She had an operation to clear the blockage. The diagnosis of cystic fibrosis followed later - it was a double hammer blow.”

Speaking on the family’s Facebook site, mum Vicky added: “My husband and I were in a terrible state and after five hours in theatre she was out and in recovery. This is the point our world almost fell apart.”

Steve and Vicky were told the most common cause of the meconium ileus was cystic fibrosis. The bowel operation left Cerys with a stoma, where the intestine is pulled through the abdomen to enable her to pass stools. When she was healthy enough she was given another operation to reverse the stoma and now, with just a scar left, Cerys family is working to raise awareness of what they call an ‘invisible illness’.

Of those who are diagnosed with the condition, only half live to celebrate their 40th birthday. Although the person appears healthy, 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 has to take a cocktail of drugs and have intensive physiotherapy. Her ongoing regime includes regular hospital visits, routinely taking vitamins and antibiotics and undergoing physiotherapy twice daily. The family also have to avoid risk factors such as people with heavy colds and warm moist environments that can harbour pseudomonas bacteria and cause serious infections.

Cerys’ parents have a Facebook page set up to track her progress and have since uploaded a video montage of her life with the condition which can be found on YouTube. It is accompanied by a song recorded by TWF featuring annaJo called Breathe with Me. Steve continued: “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 their family too.

“Most people will know that cystic fibrosis is a condition that has something to do with the lungs, but they do not realise the full impact it has on daily life.”

Cerys’ family are backing a Breathe with Me campaign to raise funds for the Cystic Fibrosis Trust and awareness of the condition. The campaign asks people to breathe through a narrow straw while pinching their nose for around 60 seconds, to experience the sensation a person living with the condition may have to endure, and post their selfie videos. Steve said: “We decided to make a video about Cerys’ cystic fibrosis journey when we came across the straw breathing selfie (strawfie) campaign.”

Upload your video and donate a minimum of £1 by texting BWCF64 £amount to 70070. Visit www.facebook.com/pages/Ceryss-Cystic-Fibrosis-Journey/249079878581743