Loving sisters can’t share a kiss
SISTERS Imogen and Annabelle Fare have cystic fibrosis but are not allowed to give each other a kiss in case they swap harmful bugs.
Both Imogen, six, and three year-old Annabelle, of Conwy, North Wales, have the CF mutation that would benefit from Orkambi.
Last summer the girls wrote a moving letter to PM Theresa May asking her to help make Orkambi available for them.
Now the sisters love playing together sharing hugs but must avoid sharing ice creams, drinks and kisses in case they swap bugs.
Yesterday their baker mum Alison Fare, 36, said: “Imogen being older has to deal with the reality more of CF and it is difficult. She says ‘I don’t want cystic fibrosis anymore! Why do I have to have it?’ It can cause a battle but she’s only six and wants to play or watch TV rather than have treatments and physio every day. She is of the age where she sees other girls her age not doing the same as her and notices she is different.
“Luckily Annabelle is still young and is doing what her sister does so knows no better yet.
“They both like swimming and doing exercise like gymnastics and dancing which is great as they need to do as much exercise as possible.
“But although they love horse riding they cannot go near the hay in case it holds bugs.”
The brave girls take a cocktail of 35 tablets a day to control the symptoms, which particularly causes mucus to build up in the lungs. Alison said: “They also have to have physiotherapy everyday and we have to clap their chest several times a day to loosen mucus in their lungs and help them drain.”
In their letter last year they wrote: “Dear Mrs May, I have CF so does my little sister Annabelle.
“We would really like Orkambi to keep us well and help us live a long and happy life. We both like swimming and playing outside. Love from Imogen Fare, aged 6, and Annabelle, aged 2.”
Alison and husband Dave, 41, a taxi driver, have been active campaigning for Orkambi for their girls and find the impasse very frustrating. She added: “This row is ridiculous.”