What is this 'cystic fibrosis' that's all over the media today?

I'm sure I'm not alone this morning in feeling horrified at the thought of journalists gaining access to Gordon and Sarah Brown's son, Fraser's, medical notes when he was just a baby and had been diagnosed with the genetic condition, cystic fibrosis. Just as a family were coming to terms with very difficult and life changing news, confidential information they were only just getting to grips with themselves, was splashed all over the media without their consent. I only hope investigations get to the bottom of how that happened. No matter how famous you are, your medical details, and especially information about your child, is confidential and should remain so!

Once again, photos of The Browns at the time when Fraser was baby and newly diagnosed are splashed all over the British papers. My thoughts are with Sarah, Gordon and the boys. I know only too well how raw these times remain, not matter how long ago, how well your child is and how well you're coping with things. Many people reading these stories will sympathise, some will be able to empathise. Some won't fully understand as they don't know what cystic fibrosis is (CF).

CF is a genetic condition. Both parents have to carry a fault on a gene for a child to inherit the disease. There is a one in four chance a child will then have CF. The disease causes thick and sticky mucous to block the lungs and digestive system, leading to multiple infections and, eventually, life threatening lung damage. Many people with CF will eventually need a lung transplant to survive beyond their 20s and, without one, the average age of survival with CF is middle 30. It's a devastating thing to be told your child has! CF means a life time taking pills with every meal to replaces the digestive enzymes the body can't produce, antibiotics, inhalers and nebulizers to keep the lungs open and free of infection and physiotherapy at least once a day. As the disease progresses intravenous antibiotics are needed more and more often, resulting in frequent hospital stays. It is a hard thing for a child to grow up with.

Faith Langley knows this only too well.  Faith is a member of postpals, a lovely charity that enables people to send post to children who spend a lot of time in hospital. You can read Faith's story here.

Faith is  having to spend more and more time poorly in hospital with lung infections caused by her CF and her Mum, Kerri, fears what the future will bring for her.

Faith, Kerri and Faith's sister, Alice, had pinned their hopes on the exciting Gene Therapy research programme that offered the hope of a cure for CF in Faith's lifetime. Gene Therapy won't fix the damage CF has already done but would stop it progressing any further. It was a huge hope for the 9000 families in the UK who have a son or a daughter with CF. This year, it was announced that the recession is causing a huge dent in the charitable donations this project is dependent on. The whole programme, and the future of children like Faith, is now dependent on raising £6million. The faster the money is raised, the faster there could be a cure for CF.

Kerri is not taking this news lying down. In September, she's climbing Ben Nevis to raise money for the CF Trust to put towards Gene Therapy research. If you'd like to help fund this vital research, please visit Kerri's page and make a donation, however small.  They have the answer, they have the cure. They know what they have to do to make it happen. The project just needs money. What better way to help than to support a mum at the same time.

Maybe some of those who should be feeling very guilty and sorry for their actions concerning Fraser Brown should dig deep in their pockets today and help secure his, Faith's and all those other 9000 people their future!

If you'd like to know more about CF, have a look at the CF Trust Website. You could also have a read of Rebecca Saunders' fantastic blog - Life of a Mum of Two With CF.