Imogen Fare, at age six, wrote a letter and became her own advocate. Both she and her two-year-old sister, Anabella, suffer from cystic fibrosis. That’s why the young girl wrote to UK Prime Minister to request access to a new drug treatment. Keep reading to learn more, or follow the original story here.
Cystic fibrosis (CF) is a genetically inherited disease. Over time, it causes a build up of mucus in the body. The mucus damages the respiratory and digestive system. Eventually the build-up blocks airways, causes severe infections, and ultimately results in respiratory failure. Click here for more information regarding cystic fibrosis.
Even at age six Imogen recognized the stakes she and her sister are dealing with. In her letter to Prime Minister Theresa May, Imogen writes
“I have C.F. so does my little sister Annabelle. We would really like Orkambi to keep us well and help us live a long and happy life.”
Imogen’s mother, Alison, lends a hand as well. She plans on getting as many other children with cystic fibrosis to write letters. On May 16th, the letters will be hand delivered to 10 Downing St. where the Prime Minister resides.
Orkambi is a recent and trail-blazing drug. It’s already available in America, but England’s National Health Service does not typically provide for it. Alison says the reason she and her co-advocates are passionate about Orkambi is because it slows the decay of respiratory function. Some reports show Orkambi reducing decline of lung function by as much as 42%.
Alison describes the drug regimen prescribed her girls as consisting of “35 tablets a day.” They also attend daily physiotherapy. Alison and her husband Dave have to clap their daughters’ chests several times each day to help loosen the mucus build up from cystic fibrosis. It’s a difficult routine for the entire family.
For now, both girls have 100% lung capacity. When you look at them, says Alison, they seem like every other little girl. They’re full of energy. Behind the scenes, she continues, it’s entirely different. She says their only hope is that in years to come new treatments will be developed. Orkambi could be a major help tot hem in the near future.