Let me introduce you to two of the most amazing children I know, Karlee and Maximus. Karlee is now 13 and in 8th grade and Maximus is 12 and in the 6th grade. These two kids are NOT just amazing because their biggest fan says so! They are both A and B students. Maximus plays baseball and Karlee plays the Saxophone. Maximus started pitching a few years ago and Karlee recently made 1st chair! In addition, they are kind, respectful and well adjusted kids! I love them more than anyone will ever know!
Five years ago our worlds forever changed; Maximus was diagnosed with Cystic Fibrosis. We knew since he was a baby he had major health issues and was a carrier of one mutation of CF, but the doctors were unable to diagnose him until they had genetic proof he in need had both mutations. CRAZY! Finally, the diagnosis came as medical research expanded and it was a blessing to know that he now would finally receive the medical attention we seeked for years. Our lives forever changed. I will never forget that day. We came home with dozens of medicines, machines were ordered and become a part of our daily life, and the battle with prior authorizations began. I had medicine boxes all over my house. The different medicines nebulized two or three times a day. Physical therapy for his lungs, pills that had to be taken every time he consumed anything other than water or fruit. The medicines did their jobs, Max gained weight and increased his lung functions. Today Max is the healthiest he has ever been!
Now Karlee has an interesting story. She was my "healthy" kid. Maybe a cold once a year, never sick. After her brother was diagnosed, I wanted to see if Karlee was a carrier, to prepare for the future; knowledge is power! Results came in...yep, she was a carrier of not just one mutation, but two! This meant she too had Cystic Fibrosis. That was the scariest phone call of my life. At this point Karlee went in to Dr. Nakamura's office to see how bad things really were. The office was thinking she may have been a carrier, but she was asymptomatic. Well, this was not the case. Her lung functions were in the pits and glucose and cholesterol levels were flying high! Now Karlee was placed on the same meds as Maximus and we were trying to adopt a routine that was the norm for Maximus, but not for Karlee.
Both kids are doing great, both physically and emotionally! I am blessed to be apart of an amazing foundation that provides a number of supports for the kids and for me. Great Strides is a walk I hold close to my heart, as the funds raised go to the research to find a cure for CF! Thank you for taking the time to read and support my two amazing children!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. We walk for them. Will you join us? To become a member of our team, just click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
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.