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.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, 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 well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.