Watch the video to find out more about the situation below.
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Video credit: Rumble
Charlotte Robinson is a wonderful three-year-old who has cystic fibrosis. To keep her alive, she needs a cocktail of medication that sees young Charlotte take 30 tablets a day that her parents Sophie, 33, and Aiden, 34, administer.
However, a new “miracle” drug from Argentina has the chance to improve Charlotte’s quality of life. It only needs to be administered once a year but the problem is that one dose costs $20,000 but it isn’t covered by the NHS so they have to buy it out of pocket.
This is why Charlotte’s parents are desperately begging for help to get the medicine that will save their daughter’s life.
Sophie, a midwife, said: “We were heartbroken when Charlotte was diagnosed with cystic fibrosis, we knew the battle ahead we would have with her.
“There’s an American company who makes this ‘miracle’ drug, Orkambi, but charges around $126K a year per person – which is why it isn’t available through the NHS.
“However, an Argentinian company makes practically the same medication Lucaftor, for much, much cheaper, so it gives families of cystic fibrosis sufferers hope.
“Lucaftor would stop Charlotte’s lung function from declining meaning she would have a very good chance of normal life; in addition to this, it would eventually reduce the number of tablets she has to take a day.”
Sophie added: “Charlotte has to take around 30 tablets per day to help with the condition and we have to do physio once or twice on a normal day too.
“If her coughing is particularly bad, we have to do physio three to five times a day – this was something we were taught to do by a professional to do when Charlotte came home from the hospital as a baby.
“This $27,000 drug would improve Charlotte’s quality of life massively.”
A heel prick test when Charlotte was only two weeks old revealed that she had cystic fibrosis, one of nine rare yet serious health conditions that can be screened for by performing the test on newborns.
Sophie added: “When we were told about Charlotte’s diagnosis, we were informed that it’s the type of condition that’s incurable but ‘treatable’ – which is why she takes so many tablets a day.
“As a midwife, I used to be the one to inform parents if their child had something like cystic fibrosis and I’d reassure them that it would all be fine – but now I have a child myself who has it, I’m a lot more understanding of their concerns.
“It’s really difficult having a child with cystic fibrosis as you’re constantly worrying about them.
“If worst comes to worst and Charlotte’s lung function seriously declines, she would need constant breathing support and it would lower her life expectancy dramatically.
“A lot of people with the condition also require a lung transplant at some point in their life as their lung function drops so low.”
Cystic fibrosis causes a thick sticky mucus build-up in the lungs, digestive system, and even other organs and results in various health issues like lung infections, fertility problems, and thinning of the bones.
For those who were diagnosed at birth, average life expectancy is 46 for men and 41 for women.
The medication that Charlotte’s parents are raising funds for can improve the toddler’s quality of life and they’re hoping they can buy the drug by the new year.
If you would like to make a donation, visit Charlotte’s GoFundMe page.