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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.