Help Haley Breathe - Goal met. Thank you!

This is Haley Bonds. She is my youngest daughter and has a chronic lung disease called Cystic Fibrosis that has no cure. Most her life, apart from vigorous treatments on a daily basis and lengthy hospital stays every two years, she has been relatively healthy, and while deep inside me I knew that one day this disease would rear its ugly head, I never expected that day would come so soon.

Seemed like yesterday, Haley was this tiny, malnourished baby who didn’t understand the struggles she would face to simply breathe each day. I remember the day doctors had delivered that dreaded news. Haley was 6 months at the time. With tears welling in my eyes, I stared down at her sleeping face as her miniature lungs labored to gasp a breath and I felt helpless, as if I’d just learned that my own life had come to an end. An ominously dark cloud settled on me then. I was depressed, seemingly alone in my hopelessness, didn’t know which way to turn, and saw no light at the end of our path.

Though, 6 months later, when I finally took Haley home to rejoin our family, apart from accommodating our schedules to fit in her many treatments and the occasional disruptions when she was hospitalized, life went on, and it was then that I realized, I didn’t need a light at the end of the path because Haley was the light guiding us on our journey, and through Haley, our family learned that life wasn’t about what we were going to be, how much money we had in the bank, or what others thought of us, but rather who we became through our fight to survive on the rocky, twisted paths we all must travel.

Fast forward 18 years. Haley is struggling. She not only has Cystic Fibrosis but she also has a condition called vibratory urticaria that has no cure and a chronic allergy condition that is making it difficult to manage her Cystic Fibrosis. Haley is allergic to all oral antibiotics on the market, most IV drugs, and anything that shakes and squeezes her skin, including the Vest and Monarch devices, the most important treatments for airway clearance. Additionally, she has adverse reactions to Ivacaftor, one of the three drugs in Trikafta. Reactions include puss filled blisters that cover her body, canker sores on her lips, hives, vomiting, swelling of the hands, face, and tongue, and airway restriction. Haley’s baseline lung function is 85% but she is down to 56% and is not getting better because she has no way to do good chest therapy at home. Since she has developed these secondary conditions, without an aggressive airway clearance, her rate of infections and hospital admissions have increased to three long stays in one year. Her weight is down, she is ghostly pale and weak, dehydrates easily, is anemic, and struggles to simply walk across the street without becoming breathless and coughing until she vomits.

What is unfair is that Haley is one of the most beautiful souls you will ever meet. Although she was dealt a very rotten hand to play through life, she never once sulked, or asked the question ‘why me,’ and while she might not be a rocket scientist, or entertainer, or someone who invented some new drug that changed the medical world, she became an advocate for those that society labeled as misfits, always giving and never taking, boosting others up when they are down, standing up for the weak, doing her best to make people smile even when she is sick, and never once asking anyone for anything. Not only is she a brightly shining light to our family, but she is a light into the world.

As for me, I’m back on that dark, rugged path as I watch this disease grab hold of my daughter and her light isn’t shining so brightly right now because she is sick and doesn’t seem to be improving. While in the back of my mind, I always understood that the day would come when Cystic Fibrosis would be front and center and my daughter would face the struggle of her life to take a breath, I thought we’d have many years before that happened. Though, I’m not going to let myself fall back into a depression, believing all is hopeless. Instead, I’m going to give the fight of my life for my daughter by putting myself out there, reigning in my pride and begging everyone in the world to help us get a medical device that will help Haley raise her lung function and give her back her life.

The device is called an IPV. Instead of shaking the outside of the body to loosen mucous, it works by blasting fresh oxygen into the airways and pushing the mucous out. Currently in Indiana where we live, this device is only available in an inpatient hospital setting and Haley has responded well to this device when she is admitted. Unfortunately, we can’t take it home to continue the effort. However, I found a supplier that will sell this device directly to me but due to political, red tape, Haley’s medical insurance won’t cover it, nor does my family have the kind of money for such an unforeseen expense. To those who stuck with me until the end of my story, the smallest donation could go a long way and will be greatly appreciated by all of us. Help us show Haley that her light is needed in the world. Sincerely, thank you. Our family just isn’t ready for Cystic Fibrosis to take over and win the war.