Introduction

We have put this blog together for all our family and friends to read. Here we will explain Sammy's diagnosis and treatment and update it with notes on his progress. We have created this so that we don't have to repeat the latest development to 20 different people or more and to help prevent difficult broken conversations we may have in the school playground. This will make things easier for us and keep you up to date. The idea for this blog has come from friends who have a son with Retinoblastoma and we know how well it works for them.


Cystic Fibrosis

Posted by Mark
Shortly after Juliette became pregnant with Samuel, but before we knew for sure that she was, I wrote the following short poem which, for want of a better title, I called ‘Inside’:

There might, perhaps, it seems, be something there.
Those new-old signals and the memory
Of hope and fear and small attendant signs
As cells divide and order and arrange
Themselves in unimaginable ways,
And reach in all their ancient alchemy
Unseeing still toward the light of life.

There was indeed something there, and it would grow and grow and enter the world as our beautiful second son Samuel. But as Sammy’s cells were dividing and ordering and arranging themselves according to the mysterious alchemy of genetics they happened to contain a defective gene from me and a defective gene from Juliette, with the result that he would be born as one of the 9,000 people in the UK who have Cystic Fibrosis (CF), a condition affecting mainly the lungs and digestive system.    

People with CF may suffer from lots of chest infections which can eventually reduce the working lung capacity. They also have a problem absorbing all they need from their food. Our job as his parents is to try to prevent Sammy from getting infections, make sure no infection he does get becomes serious, encourage him to improve his lung function through keeping fit and give him medication which helps his body absorb all that it needs from his food. If we can do this Sammy should have a relatively 'normal' life and will go to school, uni if he wants, and work in the field he chooses. Life expectancy for people with CF is lower than for those without and currently the median age for life expectancy in the UK is 41; however a baby born today will be expected to live longer due to advances in treatment. We will of course have good times and bad times but hopefully more of the good.

For more detailed information on CF go to the Cystic Fibrosis Trust website.

If you feel like you want to do something for us and don't know what or how you can help please consider making a donation to the Cystic Fibrosis Trust as we want to help further their research into gene therapy which could make a real difference in the treatment of CF and potentially to Sammy's life.