Ok... it's been 15 years... Ella's a freshman in high school now. She loves music, and clothes, journaling, and dancing... and is an amazingly organized, super hard-working, incredibly diligent student. She's become an integral part of her school's theatre department... a leader on the Costume Crew. She's learning to drive... a stick shift! She thinks a lot about college... where she wants to go, what kind of a career she wants to have, the kind of person she wants to be. She went into high school not advertising her Cystic Fibrosis to the new people around her... not wanting it to be the defining thing all these new people saw. But, make no mistake... CF still informs her every day, her every activity.
Yes, she's healthy right now... in part because of the new medication she's able to take thanks to YOUR previous donations that supported the research... but CF never stops. She still gets up well before the sun, hooks herself to machines for two hours a day, and swallows pills by the handful. We still worry about coughs, stress about lung function, and struggle under the weight of a chronic illness that never lets any of us take a break.
Our challenges are different than they were 15 years ago, but they aren't any less burdensome. The older she gets, the riskier life feels, the more concerned we are about what her future holds. Will she be able to go to the college she wants to? Will there be a Care Center close enough? Will her health keep her from going where her heart leads her? So many unknowns. Maybe there will be better medications by then and she won't have to worry about getting treatments done before going out with her friends on a Friday night. Maybe her health will be so stable that being near a Care Center won't be a deciding factor in what school she can go to. Maybe the outlook will be so good that she won't be tethered to a black cloud of uncertainty about her future.
So many unknowns and uncertainties...
Still... after all these years.
I wish I could tell you this fight was over... that there was a finish line and YOU helped us cross it... that we won this.
But it's not over... the finish is still out there somewhere... and we have to keep going.
So, we have to keep asking... you have no idea how much I wish we didn't have to keep asking... but...
It's Great Strides time... and here we are again... asking.
So, researchers who are working tirelessly have enough money to finally finish all the medications that are in the works.
So, more people all over the world will have access to treatments that will change their lives forever.
So, the life expectancy for people with CF will someday be the same as the life expectancy of a normal person.
So, Ella, and all the other people living with CF, will be able to explore the world and live their dreams without restrictions.
Please, take a moment out of your day to donate to our cause. Our fundraising goal is a high one and we need your help to get there. The CF foundation will make sure that your money goes where it’s needed the most and all donations are 100% tax deductible.
Click on the “Donate To Me” button at the top of this page to donate to our cause and help us and all other people with CF.
Ella keenly understands the situation she is in and is truly trying to make the most out of every bit of life she has. She sees your donations as an investment in her... a vote for her... an endorsement of her life. Conversely, when we throw our plea out there and it falls flat you can see how Ella might interpret that. Please... we can't do this without you... please help us show Ella she will never be in this alone... that you believe in her and her dreams... that you'll be there to cheer her on, however long it takes.
We will be so forever grateful.
Until there's a Cure