Little Adam's story

 

 

For us, the story began in April 2012 just days after Adam, our second, was born. As for the diagnosis, we found out the hard way – Adam had meconium ileus and had to be operated on when he was just three days old. His entire large intestine was very heavily clogged with what doctors described as something resembling industrial glue and had to be bypassed to allow it to heal, which resulted in little Adam having an ileostomy that was only partially closed in March 2013.

 

Since the diagnosis (both of Adam’s gene mutations are delta f508, the most common and most devastating CF mutations), we’ve been battling with a string of infections and with his digestion – due to full pancreatic insufficiency, low appetite and the loss of a total of 50 cm from his small intestine in the course of both surgeries, Adam’s current weight at 18 months (9.7 kg) has only just reached that of his big brother Chris at eight months. His failure to thrive makes our hearts break even though we fully realize that Chris was an exceptionally robust child and is perhaps not the ideal benchmark for little Adam.

 

Adam may not be a good eater but his appetite for life is enormous; he is very cheerful, loves people, is adored by his big brother Chris and has given us so much joy! You can see that brotherly love in the pictures.

   

 

We have made it our mission to make sure that little Adam lives a wonderful, fulfilled existence. Perhaps he’s not destined to live the longest of lives, but we strongly believe that we can offer him plenty of love, laughter and experience, at least as far as his health and our financial resources permit.

 

This involves the inevitable dilemma, first of all, the health-related one (should we protect Adam from the outside world and obsess over infections, exposure and hygiene, or should we let him enjoy life) and, second of all, the financial one (should we earmark every penny we earn or raise for his medical care, or should we concentrate on living a good life with tons of experiences, travel and other attractions before Adam’s condition deteriorates).

We believe we have found a golden middle; while not missing any opportunity to find a good deal, we choose to travel (by visiting friends or combining Daddy’s business trips to seaside towns with family vacations), eat good food, and show the best the world can offer to our sons. We have decided to live in the moment and celebrate the time we have with Adam and his brother Chris to the fullest.