My name is Katie Von Hagel and I am 20 years old. I am currently in the nursing program at Wallace State CC and hope to be a Labor & Delivery nurse once I graduate. Outside of school, I love doing Crossfit, hunting, babysitting, spending time with my family & boyfriend, and shopping with my friends. When I was 2 years old, I was diagnosed with Cystic Fibrosis (CF). I take around 20-25 pills a day and do daily breathing treatments. I started a new drug called Trikafta in December 2019. It has worked miracles for me and for all the other CF patients out there taking it. CF patients have a lot of mucus buildup in their lungs which causes them to cough a lot but since being on this new miracle drug, I never cough anymore (unless I’m sick). I use to cough daily and sometimes to the point where it would make me sick. But since being on this new medicine, it has done so many amazing things for my body. I have felt so much more energetic to where I was able to start doing Crossfit and have been for about a year now. There are still times where I have some setbacks but that is just life. I recently was admitted to the hospital and had to stay for a week. Where my lung function is usually 116-118, it had been declining for the past couple of months and we didn’t realize until I went to my 3 month check-up and it had declined to the 90s. They weren’t sure what was wrong because I didn’t feel bad but we knew something wasn’t right. They found out I had an infection in my lungs and started me on IV antibiotics. Now that I am home, I am taking oral antibiotics and doing my breathing treatments 3 times a day. We are hoping and praying that when I go back in September that my lung function has come back up to where it usually is. This is just part of having CF that I have to deal with. It’s not always great, but I try to live life to the fullest and never let anything bring me down.
Colton is 11 years old and enjoys what all 11 year old boys naturally do. Fishing, hunting, baseball, football and recently Legos. He leaves shoes in the middle of floor, procrastinates going to bed and despises waking up early to go to school. Loves Christmas and his birthday, as well as any occasion gifts, come his way. Living life to the fullest and overcoming things most his age do not face.
Most children the age of Colton, or any age, live the same life and do the same things. For Colton it is different, his day is average but with extra necessities. He has a disease that doesn’t affect how he walks, looks, or cast for that big fish. He fights daily like that bass that breaks your line.
At birth, cystic fibrosis changed his day to day life. He gets up early and starts his day with therapy. Using a nebulizer and chest physical therapy averaging 30 minutes before breakfast and another 30 minutes at bedtime. This is only when he is not fighting bacterial infections, which acquire more treatment. On average Colton takes 20-30 pills to maintain his health. Hospital stays are nothing unfamiliar, this warrior spent six weeks at Children’s of Alabama immediately after birth. Within 3 weeks Colton had two surgeries to correct intestinal problems. In the last part of 2016, he was treated at Children’s of Alabama for three infections.
Spending a total of 44 un-consecutive days that were followed by going home with a PICC line for six weeks. Continuing to fight the infections he added 3 antibiotics to his day to day
regiment. After 14 months he was able to end taking medicine for those. The year 2019 was another battle, Colton seen another 18 days at Children’s of Birmingham.
Today is a new day, Colton still does his routine in the morning and at bedtime. He still loves fishing, hunting, baseball, football and leaving shoes in the middle of the floor. He is our 9-year old that fights a disease most have never heard of. Recently, medical leaps have changed the lives of many that fight cystic fibrosis. The fight is not over, cystic fibrosis has many mutations and affects individuals differently. Colton is a warrior and he has beat CF time after time and will continue to.
Adelynn is a very independent 2 year old. Most days she is doing something physically far beyond her years. They say children diagnosed with a "terminal disease" tend to mature faster. I don't know if that is true, but it is beyond accurate for Addie. We received a phone call when Addie was 10 days old, stating she had tested positive for Cystic Fibrosis within the Tennessee newborn screening criteria. It was a Monday. It was the worst day of our lives. We were at Children's Hospital Pulmonology Office Tuesday, and the Cystic Fibrosis Clinic Wednesday. Weeks were whirlwinds and months were marked by appointments. We could not (and still cannot) believe how well she handled everything. Sweat tests, throat swabs, x-rays, blood draws, eating applesauce at 12 days old to take her enzymes, the list goes on and on. We had so much to learn and we were in such unfamiliar territory. Adelynn was never phased. She was never scared. Honestly, we draw all of our strength from her. She still meets everything head on. My husband says she is always "full throttle". We have learned a new way to look at and love life; through the eyes of a sweet, smart, STRONG two year old girl. A girl who will never let anything limit her. A girl who lives to the max and absorbs any and everything she is exposed to. A girl who would live outside if it were allowed. A girl who plays in mud and tries to eat worms. A Daddy's girl. A daredevil girl. A girl who happens to have CF. A fighter. It is this type of strength that fuels us. We are reminded daily to take nothing for granted; we will take each battle as they come. As for now, we continue to be amazed at the heart and courage of a toddler.
The Live Like Libby-Love Like Libby Foundation is a nonprofit foundation in memory of Elizabeth "Libby" Scott Hankins of Gordo, AL, a double lung transplant recipient who suffered from Cystic Fibrosis.
*written by Brad Nuss a tournament angler
My brother was 42 years old when he passed in 2008. He and I used to fish Logan Martin Lake all the time together. We had a place there for a while. He was a master craftsman who could make anything out of wood. He loves to fish and was one of the funniest guys you would have ever met. He taught me how to fish, play baseball, and basketball. He was an awesome brother and is missed dearly by his mom, brothers, and sisters.
Sicilee is a 5, soon to be 6, year-old CF warrior. She had surgery at just 2 days old due to meconium ileus, and it was that very day that we learned she had Cystic Fibrosis. She spent 32 days in the NICU at East Tn Children's Hospital. Since birth, Sicilee has had 6 hospitalizations and 3 sinus surgeries. Sicilee is an all-star competitive cheerleader, to keep her active and her lungs as healthy as possible. She's just a little girl who loves her baby dolls and anything Disney. Sicilee is a very strong-willed little girl and is determined to not let CF slow her down.