In 2015 our lives changed we welcomed the birth of our first child, but that wasn’t the scariest part. We were told he had cystic fibrosis at a few weeks old. What that meant no one knew in our family.
A life of constant medication, physiotherapy and hospital appointment. Zac has 2 copies of the f508del gene and if there is any chance we can help him extend his life and minimise hospital visits we will fight. He was currently been in ICU for 3 days and it hit home very hard, a lot of questions where asked “will he be here again?”, “how can we keep him out of here?” Truthfully the answers are no we will never keep him out of hospital and it won’t be the only trip to ICU.
Kids need to be kids. Run around with their friends. They shouldn’t have to worry about what they eat and remember to take medication before every meal so they tummy doesn’t get sore, or they have oily smells and then get embarrassed. Our baby is our world. He means to world to us and if we can add extra years to his life we are going to fight to do so.
by Janine
* This is a personal story and may not necessarily reflect the values of Cystic Fibrosis Community Care