For the month of May we are doing something near and dear to my heart at Our Play Place. May is cystic fibrosis awareness month. As some of you may know that I (Jess), have CF and although I am beyond blessed to be on a gene modulator that is allowing me to live a full life, it is NOT for everyone. For the entire month of May we have teamed up with Petite Rae Cookies and ALL profit made from cookie sales will be donated to two little warriors (Logan and Carter) we are about to introduce. Please help us keep fighting for a cure!
Hello from Logan and Carter,
We are so happy to collaborate with Jess and her family! We love Our Play Place!! Carter and Logan are 3-year-old, almost 4-year-old (in July!) twins with cystic fibrosis. Diagnosed at just six days old, Carter and Logan were connected to our wonderful Tucson CF Center days after birth.
Since that day we have been committed as a family to do every treatment, take every enzyme and vitamin, attend every clinic appointment and to stay as healthy as possible while still living a very fun and busy life! Carter and Logan have a big Sister named Penelope who is 5 years old. She helps with just about every part of her brothers day-to-day CF routine! We think she will make an excellent doctor one day!
We did chest physiotherapy on the boys for airway clearance when they were little and have since moved to using The Vest. We call it “shakey-shake” so, twice a day for 30-minutes at a time, Carter and Logan do their vest treatment to make sure their lungs stay clear and free from thick sticky mucus. Along with taking enzymes (small pills) with everything they eat, that includes meals and snacks. We never forget our vitamins, and Orkambi twice daily! Orkambi is a gene modulator what the boys have been on for almost two years now, it has been wonderful!
During the last year, with COVID, we took all of the same sanitizing precautions, staying in, and ordering food for our family. We did our best to keep things as “normal” as possible, and the kiddos had a lot of fun with the family, and with Mommy working from home. As new medical advances begin to come to life, we are looking forward to Trikafta for the boys on day soon! It sounds amazing for almost all people with CF, we can’t wait to join in!
I am also an active member of the PFAC which meets monthly to discuss wany to improve the lives of those living with CF. I attend weekly meetings virtually with the clinical team, as an active member of the Quality Improvement Tucson CF team. I love both, I feel like that’s where I learn the most, and can be of service in our family’s CF journey! I have also presented an Ignite Talk during a Cystic Fibrosis Learning Network conference in California two years ago. What a great room full of support and love that was!
Overall, the boys have been doing amazing! They are growing, funny, happy, playful little guys! They love hanging out in the backyard, gardening, making food, playing in the pool and riding their scooters! Thank you for featuring our family this month! 😊
Cystic fibrosis is a hereditary disease that affects the lungs and digestive system. In a body of someone with CF, their mucus is thicky and sticky which leads to multiple complications some of which include chronic lung infections, pancreatic insufficiency, male infertility, chronic sinus infections, osteoporosis, and CF related diabetes. In the 90’s Cystic fibrosis was considered a childhood disease because most individuals did not make it past their teens. Now, with the amazing support and fundraising they developed a gene modulator that has help correct the defective protein that causes CF making those able to take this mediation live a much longer and healthier life. Unfortunately, it is NOT for everyone, including children 12 years and younger. Please join us in the fight for an ultimate cure for CF!