Hi Everyone!!
I hope eveyone is well and having a wonderful year so far!! Finally some nice weather!!! We are so EXCITED to be participating again this year in the Great Strides Walk.. It will be held Saturday 4/27 @ Cedar Crest College.
For those of you that are new to us this year, CF is a big part of our lives. We have 4 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, 17 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 there is NO CURE!! But the life expectancy continues to climb with continued progress in new medications.
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 17 year old in the 11th grade!! I know I know next year a SENIOR!!! Where does the time go?? So far she has had a GREAT year ~ no admittance to the hospital ~ and they are happy with her progress. She is now going on 4 years of being on the drug TRIKAFTA which stops the progression of CF. She has been doing AMAZING on it!!! She has been doing Awesome things this year with her musical talents which include singing at many different events with tons of people!! She is absolutely BEAUTIFUL out there and performs like the star she is and we couldn't be more PROUDER!!
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 10 years old and in the 5th grade!! This has been a FANTASTIC year for him. He also began Trikafta and has been on it for the last 3 years!! And doing AWESOME on it!! His weight has finally picked up and we cant be more happier!! At his last visit he gained a whopping 9 lbs!!! And those of you have been on this journey with us since the beginning know how AMAZING this is!!! He has become a sports addict!! Can't keep him busy enough!! He is now doing Travel baseball & soccer and also Rec baseball & soccer.. So he is definitly keeping us busy!!!
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 & EVERY ONE of you Saturday 4/27!! If you would like to join us ~ Please click the "Join Our Team" AND Donate!
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!!
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.