WHEN Warrington mum Danielle Cartwright filmed her daughter Talia May taking her medication and proudly posted the video online, she never guessed it would be viewed by over 63,000 people (and counting).
The reason the video generated such interest is because Talia is only 20 months old and now the Great Sankey youngster is helping raise awareness about Cystic Fibrosis, a life limiting genetic condition.
She was filmed quickly self-administering four syringes of oral medicine with no fuss and even asked for more when she had finished. While the majority of us struggle to get our children to take any medicine, Danielle has managed to teach Talia that taking medication is a positive experience, asking her to clap her hands at the end and even getting her to say ‘yummy’ when she takes her favourite banana flavoured dose.
However, Danielle has a strong motivation to make this daily routine a positive experience. Talia was diagnosed with cystic fibrosis when she was a little over two weeks old. The date – 14th November 2014 – is burned into the memory of Danielle and her fiancé Stuart Coombs.
“When you first hear you are full of shock, hurt and anger” said Danielle. “Of course you also wonder what the future will hold. We are still coming to terms with this, but we have the best family and friends who have been amazing. Although having a child who is living with this life-shortening condition is still very new and raw, we have spent every waking hour researching the condition. We have also spent a lot of time with doctors to understand more. We still have a lot to learn.”
Cystic fibrosis is a life-limiting 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.
“Although there is currently no cure for Cystic Fibrosis there are lots of things we can do to help ease the effects” said Danielle. “Talia will need medication, a special diet and physiotherapy for the rest of her life. It will quickly become the norm for her and we have read so many positive stories that have filled us with hope for a bright and long future together. We just need to do things a little differently and stay positive.”
Talia has already experienced several complications. In August 2015 she was admitted into hospital with a CF related bowel blockage. Then in March this year she was admitted again for two week of intravenous drugs to treat a bug called Pseudomonas aeruginosa that affects people with cystic fibrosis. She currently has to use a nebuliser in addition to her oral medications. Physiotherapy to help shift the thick, sticky mucus is a daily requirement and there are risk factors that the family have to try to avoid.
Talia’s family are very keen to raise awareness about CF and Talia is also featured with her nebuliser and blowing bubbles as physiotherapy, in an awareness video about the ‘Breathe With Me’ Strawfie Challenge – a social media initiative that seeks to involve more people in campaigning about cystic fibrosis – (see top of page)
“Talia has a specialist medical team and they have become our extended family” said Danielle. “Talia has been brilliant. She is so loving, strong and full of life and makes each person she meets smile from ear to ear. She’s our world and more. Together we will beat Cystic Fibrosis.”
To find out more about Cystic Fibrosis please visit http://www.cysticfibrosis.org.uk
For more details about the Strawfie Challenge visit www.breathewithme.info
