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.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.