Austin Huus, 2014/2015 Youth Ambassador


Austin Huus, 2014/2015 Youth Ambassador


12/18/14 (Thu)

Austin Huus, 2014/2015 Youth Ambassador
Written by Austin's mother, Lisa.
Austin was born on January 6, 2009 with Meconium ileus and ended up in ICU before his discharge. It was there that we were told he possibly had CF, which we later learned was the case. He spent 18 days in ICU and we began our journey learning about cystic fibrosis and caring for someone who has it. Austin has two DeltaF508 genes and has both respiratory and digestive issues with his CF.  He takes a whole list of oral and nebulized medications throughout the day to maintain his CF, along with chest physiotherapy twice a day. Treatments have been forced to every four hours when respiratory illnesses take a hold on Austin. He has taken part in two clinical trials to help doctors find new treatments and medicines for those with CF.

 Austin was hospitalized five more times before he turned nine months old. He had several respiratory infections, included pneumonia, RSV, and Pseudomonas. Not only did this disease turn our lives upside down financially and emotionally, it also put us in a position where daycare was not an option anymore.  A job I had with Bobcat for 17 years suddenly turned into a memory. I quit and became a stay at home mom with a long list of daily chores to care for our new child. Austin was so sick during that first year that we spent a minimum of two days a week traveling to Fargo for doctor appointments. He now goes to the University of Minnesota Cystic Fibrosis Center in Minneapolis.

Austin has a brother, Jarrett who is 14, a sister, Makayla who is 12, and no family pets. One by one, as Austin continued to get sick, we were forced to get rid of our family dog and cats. Austin’s dad, Greg, has a very big family and we are very surprised that we have not found any of them with CF or even symptoms. We did learn that on my side, my dad’s second cousin had several children with CF and many of them died as children. Two are still living and have CF.

Austin has continued to struggle with respiratory illnesses and gaining weight throughout his life, which have resulted in many more hospitalizations. His weight issue just recently became too severe and in June was put on a feeding tube to help supplement his nutrition.  This was a difficult decision to make but it has proven to be the best thing for him. He has gained weight, became even more energetic (which I did not think was possible), and it has helped him transition into a thriving Kindergartener. He loves learning new things and spending time with his friends.

Austin is such a strong, determined, fun loving, happy, energetic boy with a love for life. He is usually the one that tells me everything will be OK. I remember one time when Austin was very sick with another respiratory infection and he was coughing quite a bit, tears started to roll down my cheeks and I told him I wish I could help him out. He looked at me with his blue eyes ( at that time….now hazel) and put his hand on my shoulder and told me, "It’s Ok mom, I know you and my doctors are doing the best you can, it is just the CF, I will be OK.” He was three then and I discovered that he is way stronger and braver then I could ever be. I often say that he is my angel and I consider myself lucky that God chose me to share his life with. He has totally accepted the fact he has Cystic Fibrosis and lives each day to the fullest. He can find a friend in a room full of strangers and brighten up someone’s day with his smile!