When Oliver was just a couple of weeks old, we received a phone call that his newborn screening test came back abnormal. After multiple sweat tests and blood tests, we discovered Oliver has two CF traits and ultimately, he was diagnosed with CFTR - Related Metabolic Syndrome (CRMS).
Unfortunately this year, Oliver's sweat tests results went up significantly, so we need to see the doctor more often. He is still healthy and does not need treatment, but it is a reminder how much more research still needs to be done.
The diagnosis of CRMS means that he does not have CF. However, the diagnosis of CRMS does mean that he may experience problems in the parts of the body often affected by CF. Although the future health of someone diagnosed with CRMS remains unclear, there is a higher risk of experiencing problems in the airways, sinuses, intestines, pancreas or the reproductive system.
Please support us!
Help us reach our fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress. Your gift is 100-percent tax deductible.
Since Oliver turned 3 this year we have a modest goal of $300 and are hoping to increase our goal to match his age every year.
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.