Eva will be 13 years old one week after the Alexandria Great Strides walk this year, a TEEN who is living with Cystic Fibrosis and already feeling the long-lasting effects of damaging lung infections and difficulty digesting food. She takes up to 25 doses of medicine or supplements a day and needs to eat 1.5-2 times the amount of food of a typical teen to help her absorb all that she needs to thrive. 2020 is a distant memory for some, but Eva still remembers it as her most difficult year with two hospitalizations for stubborn pneumonia and over two weeks of IV antibiotics at home. Even now when she gets a cold and has to increase treatments to 4/day at 2.5 hours/day, a lingering thought is "Will this one land me in the hospital?" The maintenance of 2 breathing treatments/day on her vest & 2 nebulizers at an hour & a half/ day is just routine now. But despite these breathing treatments, she still experiences lingering fears and some side effects of her new medicine Trikafta.
She was recently accepted to the theater magnet at her local Junior HS and she can't wait to shine on stage (or behind the scenes!). She was in a summer community theatre group a couple of weeks ago that performed “Frozen” after only 2 weeks of practice. She smiled and danced throughout the entire performance-even though she was tripped and fell on stage with 2 pieces to go. She bounced back up, continued to sing, dance and SMILE- only to learn later that she broke her arm in the fall!! THIS is our EVA, a bright, energetic, strong, resilient and deeply compassionate teen (almost!) Her laughter is infectious and her smile a gift.
Eva’s mom reports: “2023 brought new challenges. She has fallen off her growth trajectory so endured a 5 hour fasting growth hormone test and may start growth hormone injections IF insurance will cover them - not just to get taller, but to give her lungs as much surface area as possible. The morbid reason is not lost on us - the bigger the lungs, the more area is available to handle the damage of this progressive disease”. She is almost as tall as Grandma (ok, that’s not saying a lot, right??, but just sayin’!!) and within ½ size of wearing the same size shoes as Mom and Grandma and FINALLY is able to shop the Junior section!!!
Because of the efforts of the CFF, there is now medication to treat the underlying cause of CF for over 93% of those affected, but this treatment is not without a cost (side effects, medication interactions & financial)! The CURE is needed desperately for ALL, the 93% who can take the most recent modulator- including Eva- AND the 7% who cannot- including MANY of our and Eva’s friends. Scientists are combining this drug with others, as well as trying completely different approaches. THE CF FOUNDATION FUNDS MOST OF THIS RESEARCH. There is no federal government funding for CF, so your donation makes all of this possible.
Here is where your donation is going:
-Almost 40,000 people in the US are LIVING with CF today, up from 30,000 in 2012…which means the therapies are working to help more people LIVE LONGER with CF. 60% of those with CF are 18 years or older now; by 2040, that is expected to rise to over 70%.
-399 studies into CF complications
-81 genetic therapy studies (THE CURE FOR ALL with CF)
-40 multi-center clinical trials in progress
-30% increase in physical size of CF Foundation Therapeutics lab
-56 is the median age of survival for a child with CF born today (This was -37 when Eva was born!)
What YOU can do:
-DONATE to the Cystic Fibrosis Foundation through Eva’s Alliance http://fightcf.cff.org/goto/annelletanner
-Register and JOIN US In Alexandria, LA on September 16 at Menard High School where registration begins at 9 am and the walk begins at 10 am (same page).
Earlier this year, her grandpa DeeDah was teasing her (no surprise to those of you who know Martin!) and she laughingly asked, “Do you have an “off’ button?” We all laughed, but Martin realized No! He most definitely does NOT have an off button when it comes to Eva. He- and we all- will keep working for a cure…UNTIL IT’S DONE!!
Will you join us?