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 6 years old, needless to say the first 6 years of his life have been really rough for him.
His daily medications include:
Albuterol-2x a day
3%- 2 x a day
Pulmozyme- 1x a day
Orkambi-2x a day
Aquadek- 1ML a day
Creon 6000- 20 capsules a day
Relizorb- 1 Cartridge at night in feeding pump with 2 cans pediasure
Flonase- as needed
TYlenol- As needed
Zinc- as needed
Vitamin D- as needed
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.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.