We are doing this to raise funds for the Cystic Fibrosis Trust. Our family and friends have now raised over £55,000 for the CF Trust since Isaac was diagnosed.... such incredible support, we can’t thank everyone enough!
In 2005 when Isaac was born, he could only be prescribed medications to treat the symptoms of his disease, and sadly, despite dreams of gene therapy, that is still true today. But we are on a brink of a whole new way of treating CF...tackling the underlying cause of the disease, which is all about abnormal movement of salt and water between cells. One drug (Kalydeco) is already available to those few with a CF mutation it will work for, and another (Orkambi, which will treat many more people with CF) is available in other countries, but not yet on NHS England, due to cost (thanks to an overwhelming response to the petition the CF community have been sharing on every social media platform going, we hope this will be debated in parliament very soon).
Unfortunately, neither of these drugs will work for our boy (he has two class one mutations, which is really crappy) but it fills us with hope for the future; however a huge amount of research needs to happen in order to deliver this kind of treatment and ensure that everyone with CF has access to these groundbreaking small molecule drugs.
We can personally vouch for just how shitty CF is:
It means my son has to spend 1-2 hours a day doing treatments, even when he is well;
It is the reason he has a bacterial chest infection all of the time, and why daily antibiotics only help keep the bugs at bay;
It is why he has spent two of the last six months in hospital;
Which means his attendance at school this term has been less than 50%;
CF is why my daughters worry, lash out and have to cope with us prioritising their brothers health over everything;
It is the reason he has had two painful operations recently;
....And why that he ended up in intensive care for six awful days;
It is why he takes dozens of tablets each day, five nebulised treatments, along with rounds of physiotherapy to shift the mucous from his lungs;
It is why we worry about diabetes, liver disease, deafness, osteoporosis and cancer, all of which can be linked to the disease or its treatments;
CF has resulted in his lack of venous access, after years of blood tests and IV treatments, and is why he now has a permenant IV device in his chest for easier access;
Cystic fucking Fibrosis explains how he was left wheel chair bound, on oxygen 24/7 and unable to even stand without becoming breathless for a time....
Everyone with CF deserves the chance of a longer, healthier life. Please support our skydiving fundraising by clicking here. Thank you x
