Colton is one out of 30,000 living with Cystic Fibrosis.
Cystic Fibrosis is a terminal lung disease that affects Lungs, Pancreas & Digestive System. Our bodies build up mucus thats pretty thin, with cf it becomes a glue like consinstency and blocks off the airways making it hard to breathe. Each day is a struggle for a person living with CF.This isnt a disease that you can see its considered a " hidden" disease. Most people living with this end up having to have 1 or more lung transplants during their life.
Having CF requires medications daily some more then others just depending on how severe their case it. Unfortunetly coltons mutation are DDF508 which is the most common , its also the mutation where its most common they get the most sick, but on the plus side this specific mutation qualifies for certain medications to help prolong their life.
Colton was diagnosed at 2 weeks old with CF. Since then he has been admitted 3 times to Riley Childrens 2/3 admissions ended with surgeries. The first surgery he needed was a Gtube placement in which he needed due to being diagnosed with failure to thrive, his second resulted in chest drain tubes being put in due to the fact that he had severe pnemomia. He was admitted into the PICU for 5 days then back to his Cf pulmoary floor. He did a 21 day antibiotic for this pnemonia as well. He was in Riley for an entire month before we was clear to go home. Since then we have delt with some issues buit not many he has scar tissue that will not go away until he is about the age of 7 or so this makes his become sick every now and then. He is on multiple medications he takes daily. Colton is now almost 8 years old, needless to say the first 6 years of his life have been really rough for him. On top of his cf he has also been diagnosed with severe ADHD. His daily medications include:
Albuterol-2x a day
7%- 2 x a day
Pulmozyme- 1x a day
TRikafta- 2x a day
Aquadek- 1ML a day
Creon 12,000-20 capsules a day
Flonase- as needed
TYlenol- As needed
Zinc- as needed
Qullivant - Daily ( ADHD)
Vitamin D- Daily
We live day by day with colton. Each day is a new day for him as we never know what his days will be like, he has good and bad days. Each day is a blessing with him and we are very greatful for that. We fight daily for a cure for our little boy to have a normal life and be able to breathe Easy without having to struggle and need so many medications.
We will NOT give up up until CF stands for Cure Found!
please join us in raising money for our little boy and others like him to raise money for a cure.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.