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.
Two years later, I know more. I know CF is a progressive genetic disease that causes sticky mucus buildup in the lungs and other organs, inhibiting their function and, ultimately, limiting the ability to breathe. I know that the threshold for receiving federal research funds is a US patient population of at least 200,000, and that there are only 70,000 people with CF worldwide. I know that Ellie had a 25% chance of receiving the faulty gene from both parents. I know that Ellie may have issues with conceiving and carrying children, that she will likely develop a chronic cough, that she may need a lung transplant someday. I know that Ellie is vulnerable to respiratory infections, and that we have to balance being hyper-vigilant and allowing her to live a normal life. I know that a 48-hour cold for Catherine will stay with Ellie for weeks or months. And I know that, even though Ellie has been remarkably healthy so far, we can’t be complacent or take her health for granted. I know that many aren’t so lucky, that CF still takes young lives.
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.
For now, Ellie takes pancreatic enzymes before she eats (to help digest fats and protein). We also administer twice-daily breathing treatments to moisturize her airways and thin her mucus, while we pound her chest and back with rubber cups to break up mucus. She’s been receiving these treatments since her diagnosis, and while they shape our days, we spend most of our time doing normal two-year-old things – laughing and playing, reading and singing. Most people probably wouldn’t suspect that Ellie has a chronic disease.
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.
If you would like to join the fight against CF, we welcome all participation – education and awareness campaigns, financial donations or event sponsorships, or attendance at Great Strides itself (registration is free)!
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 firstname.lastname@example.org or Sam Swanson, Senior Development Director for DFW, at email@example.com with any inquiries about getting yourself or your company involved with the Great Strides walk!