Below is a guest blog post written by my dear friend Erin Vaden. Erin is a strong, graceful, and incredibly kind mom of two who is now a Board Member for the Cystic Fibrosis Foundation-Fort Worth Chapter. She has shared her experience, her heart, and her mission to protect her beautiful daughter, Ellie.
I have two daughters. Catherine is 4 and arrived at 34 weeks via emergency c-section. Ellie is 2, and I had an easy pregnancy, considering every day past 34 weeks a triumph. Then, at Ellie’s two week checkup, we got some surprising news: her newborn screen was “inconclusive” for Cystic Fibrosis, and we would have to wait two more weeks for the results of a second blood test. At the time, I didn’t know much about CF, just that it wasn’t good. Two weeks later, Ellie’s diagnosis was confirmed. Shortly thereafter, we met Ellie’s CF clinicians, which include a pulmonologist, dieticians, respiratory therapists, and a social worker.
But there is hope. The Cystic Fibrosis Foundation (CFF) has been pouring funds (which primarily come from grassroots donations) into drugs and therapies to extend the lives of people with CF and improve their quality of life. There is no cure, but there are currently three drugs available that have shown improvements in lung function, weight gain, and frequency of exacerbations in people with CF, and all three were partially funded by the CFF. While in the 1950s, children with CF rarely lived to attend elementary school, average life expectancy is now 47. The Foundation has even begun funding research for gene-editing therapies that may lead to a one-time cure. The science is there; it takes time and money to convert that science into a usable format.
I think that’s the most amazing thing – while CF has profoundly affected our family, this is Ellie’s normal, and she handles every treatment, blood draw, throat swab, and chest x-ray with more patience and ease than I can even comprehend. She even requests her enzymes before she eats – and she can swallow the capsules!
At first, I struggled with an acute out-of-control feeling. But as time passed, we realized we can control some things. We can’t necessarily control what she will come into contact with or how her body will react to illness, but we can administer her treatments and meds to the letter, and we can raise funds for the CFF. We are Board members for the CFF’s Fort Worth chapter, and we are currently co-chairing the chapter’s biggest annual fundraiser – the Great Strides walk – for the second year. Since 2016, Ellie’s team has raised over $37k, and we’re just getting started.
Ellie’s team page is fightcf.cff.org/goto/EllieVaden2018 – or you can form your own team! We aren’t picky; every dollar the CFF receives gets us closer to a cure for Ellie and everyone else with CF.
Contact Erin at erin.vaden@gmail.com or Sam Swanson, Senior Development Director for DFW, at sswanson@cff.org with any inquiries about getting yourself or your company involved with the Great Strides walk!