I hope everyone is doing well!! We are so EXCITED to be returning after an AMAZING year last year!! We will be walking on May 2nd in the Lehigh Valley Great Strides Walk, which is held at Cedar Crest Community College. We will also be ordering shirts for our team like we have done in the past. They are $20 (half of the proceeds with go to the foundation as a donation and the other half will go towards the purchase of the shirt). If you would like one please let me know as I must order them by April 1st.
For those of you that are new to us this year, CF is a big part of our lives. We have 4 (Thats RIGHT!! We have added 1 more to the Arias clan!!) beautiful and amazing children, two of which were born with CF. Unfortunately, this disease has affected our family too many times. We lost Johnny's sister, Suley, eleven years ago at only 22 years of age, due to complications pertaining to CF.
Cystic Fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the abilitly to breathe. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria which leads to infections, extensive lung damage and eventually respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that are needed in the body to break down food and absorb vital nutrients. As of today, the life expectancy of someone who has CF is 37 years old, and there is NO CURE!! .
Here is a little background and update on my CF Troopers!!
Our beautiful babygirl ~ Ashley Paige was diagnosed at 6 weeks old. She is now a AMAZING, VIBRANT, LOVING 13 year old (still cant believe she is a teenager!!) in the 7th grade. So far she has had a GREAT year ~ no admittance to the hospital ~ and they are happy with her progress. We are beyond HAPPY and EXCITED to announce she began the new medication Trikafta ~ which stops the progression of CF!!!! She has been doing AMAZING on it!!! She joined a competitive hip hop dance group this year and is in the drama club.
Our little monster ~ Jacob Chase was diagnosed at 3 weeks old. This little trooper, who was born 6 1/2 weeks early, has definitely had some battles in his path, but he always seems to overcome any obstacle. He is now 6 years old and in the 1st grade!! This has been a good year for him also. His weight has finally picked up and we cant be more happier!! He loves baseball, soccer, hockey and ofcourse Nerf play!! Haha!
So I am reaching out to you for your HELP to reach my goal off $10,000. Nearly$.90 of every dollar goes straight to vital CF programs that support research, care and education for Cystic Fibrosis. With your help a cure is in our REACH!!
We hope to see EACH & EVERYONE of you on May 2nd!! If you would like to join us ~ Please click the "Join Our Team" below and register! If you are unable to make it but still would like to donate ~ Please click the "Donate Now".
Every little bit helps make Ashley, Jacob and all those fighting CF live healthier and longer lives!!!
As always our family can't THANK YOU enough for all the continued LOVE & SUPPORT!! We are so truly BLESSED with the AMAZING family and friends we have!!
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.