My Story
Hi, my name is Katie. I am multiple things…a Kentucky girl living in Arkansas, a southerner that loves snow, a flower farmer, a photographer, a lover of music but cannot carry a tune, a mom to 3 funny, kind boys that I love fiercely and to 4 pets (we include pets in our family). I am a wife to a loving husband of over 20 years that still makes me laugh every day and a lover of nature and ordered chaos. With three boys and four pets, there aren’t many dull moments in our pocket of the neighborhood. It is a bit of a zoo but I would not have my life any other way…except for my son’s Cystic Fibrosis (CF).
Almost 7 years ago, our family's world was rocked when my youngest son, was born with Cystic Fibrosis. Learning your newborn child has a progressive, genetic, life-shortening disease is one of the worst things that can happen to a parent. For those that don’t know much about CF, it is a genetic disease that affects the lungs and pancreas primarily and other organs secondarily. Our son has the genetic mutation delta F508, the most common Cystic Fibrosis mutation. This makes him prone to lung infections and leads to trouble with digestion requiring him to use a percussive vest to break up thick mucus and ingest pancreatic enzymes before food. Our son is incredibly tough and has taken ownership of his disease. We tell him he has CF super genes. It takes a lot to bring him down…ask his brothers.
Early on, I was asked to participate in CF related events and always said no. The first few years were rough. I was angry, terrified and grieving all at once. Part denial and part exhaustion meant I was barely keeping my head above water and the last thing I wanted to do was be reminded that my son might not outlive me. In hind sight, we probably all should have been in therapy.
However, in November 2022 I was asked to be the parent representative in a research project at Arkansas Children’s Hospital on acid suppressor therapies which are commonly prescribed in children with CF to improve pancreatic enzyme supplementation efficacy or/and to treat gastroesophageal reflux symptoms. I tentatively said yes and am so glad I did. That lead to me being on the Cystic Fibrosis Family Advisory Board (FAB) at ACH in 2023 and then the Cystic Fibrosis Foundation (CFF) Local Chapter Board in 2023.
Being present in all of these has given me access, knowledge and empowered me in ways I would not have had otherwise. I have met some amazing people along the way; a doctor in Connecticut helping care for kids with CF in medically deprived countries oversees, researchers in Birmingham working tirelessly to find a cure, an advocacy & government affairs specialist as well other moms of CF children who are fighting for their kids just like me. Whatever the organization may be, I truly believe having someone who lives it is invaluable to the mission & success of the group. When an organization does not have someone in that seat, they are at risk of losing sight of what they are fighting for. Kids and people like my son.
Luckily, because of amazing research leading to new medications, my son’s prognosis is not what it would have been if he were born a decade earlier. My husband and I see our son fight his disease every day. The least I can do is fight for a cure for him. For me, that means attending medical conferences such as NACFC (National CF conference) to have the most up to date information on CF, attending VLC where I can learn about new ways to raise awareness and being an active participant in every way that I can locally and nationwide.
By raising awareness, my hope is that it will hopefully lead to raising funds to continue the research for better medications and ultimately, a cure. As parents we will do anything to help our kids. This is my way of trying to make a difference. Our “normal” may be different than most people but we hope to give our son the best opportunity we can. It is what we hope for all three of our boys, just like every other parent. And it is why I put in countless hours on these CF organizations and events, hoping in the end it leads to a cure.
Cheers, Katie Sachleben :)