That time of the year again. My Family walks at the Cleveland Zoo every year and raises money to help fight this terrible disease. Scroll down a bit for some info about my girls and learn about CF and what my girls have.
Some pics and newest update below for those that are interested.
Every year, our family walks to support the Cystic Fibrosis Foundation. Before they turned 1, our twin daughters were diagnosed with CFTR-related metabolic syndrome (CRMS). What is CRMS ---> https://www.cff.org/What-is-CF/Testing/CFTR-Related-Metabolic-Syndrome-(CRMS)/
They have one “classic” or severe cystic fibrosis-causing genetic mutation and 1 variant mutation that when paired together may cause cystic fibrosis-like symptoms in the future... Cystic fibrosis is a genetic disease that causes lung, sinus or gastrointestinal problems due to chronic thick mucus in the body.
Reagan and Alexis still continue to see their pulmonologist twice a year. We’ve done more testing to try to determine why there are (minimal obstruction) changes on their pulmonary function testing (lung tests). They had CT scans of their lungs which showed a few areas of scarring and thickening in their airways. We did not see signs of cystic fibrosis (something called bronchiectasis) so we were VERY relieved. Alexis’ lung testing has remained stable. Reagan’s has gone down a bit, but is still considered stable.
The girls had repeat sweat testing which was unfortunately abnormal. Typically 2 readings of 60 or higher indicate cystic fibrosis. Reagan had a 51/60 sweat test in 2014. Her sweat numbers were 66/67 on this test. Alexis’ sweat test in 2014 was 49/52. Her sweat test recently was 56/64. The CF team has decided to wait for more clear signs of cystic fibrosis to change their diagnosis to CF at this time. There are specific signs, symptoms and test results we will be monitoring for.
In the meantime, the girls will be using an aerobika airway clearance device when they are sick to help remove mucus from their lungs. They don’t seem to need it when they aren’t sick, so we’re grateful for that sign of health!
Our family has had a rough few months of illness including influenza A for Alexis and a course of influenza B for Reagan. We continue to count our blessings that outpatient treatments seemed to help them feel better.
Our children's diagnosis has opened our eyes to the devastating effects of this terrible disease and we want to help bring a cure to those who are suffering from this illness. Your donation can help develop life-saving curative treatments and medications. ANY donation is welcome and VERY appreciated. Thank you!!!
Link to donate below