We appreciate you taking the time to hear our story. Our daughter, Piper, was born with Cystic Fibrosis (CF). We have been walking the journey with her over the last 6 years of her life. She is a spirited little girl and a fighter. She has been through so much in her life and she continues to take everything in stride as she fights for her health and wellness.
The first 3 years of Piper's life were plagued by multiple hospitalizations and far more questions then answers. On top of her CF, she had failure to thrive which led us to get a G-tube inserted to ensure she was able to get the calories she needed to get her BMI up to the goal levels being pushed for. at 3 years old, Piper was selected to be on a research/trial medication (Orkambi). When Piper started her trial medication we noticed, almost immediately, that not only was she feeling better, but her appetite increased drastically. She went from fighting us on every meal to asking us for meals and snacks. This medication was a blessing and an answer to prayers for our family. After three years of regular hospitalizations being the norm for Piper, it was so good to see her health take such a drastic turn for the better.
Unfortunately, things took quite a turn this year. After almost 3 full years of no hospitalizations, we have been hit pretty hard in 2019. Our first hospitalization was in July. Piper had appendicitis and was hospitalized over the 4th of July. Piper was bummed by the timing of this, but our family was grateful the hospitalization was unrelated to her CF.
Several months ago, we were blessed to find out that Piper was one of (50) kids, nationwide, to be selected for a new trial drug, the best possible drug available to CF patients. Due to the wonderful success we saw in Piper's health, with Orkambi, our family jumped at the opportunity to partake in this new research; for a medication that was even better than the one she was already taking. Part of the requirements for the research was to do a "washout" period where Piper was intentionally taken off Orkambi to ensure she was coming into the research the same as all the other patients. This washout period was supposed to be 28 days. We knew there was little risk involved and the reward of getting Piper on the new medication earlier than she would otherwise be able to, far outweighed the risks we could foresee at the time. Unfortunately, it's exactly what we couldn't foresee that caused the issues Piper has dealt with over the past several months.
Since coming off Orkambi Piper has had multiple trips to the Emergency Room as well as hospitalizations. Once for pancreatitis and multiple other times for complications due to intestinal blockages. After several weeks of testing, her team of specialists came to the conclusion that her symptoms were linked to the mandatory "washout" that was required for the research. After the realization, we pushed through the last few days of the "washout period" and she is now thankfully on the new study drug. Unfortunately, each of these hospitalizations came with unexpected bills and missed hours at the office and at home. As the hospitalizations piled up, so did the medical bills and the stresses that come with unexpected financial burdens. We've done our best to push through these things, knowing that Piper's health is our primary concern, and have trusted that the rest of these unexpected trials will work themselves out over time. Since Piper was diagnosed with CF, her health needs have limited my my wife's ability to work. She is the primary care provider for Piper and needs to be available in order to care for Piper and deal with the planned and unplanned things that come along with CF. We're very grateful for my job and thankful that it has helped us live as a single-income family. We do our best to plan accordingly for health care costs, but we've had 4 hospitalizations in the last 6 months and none of them were expected or planned for.
As these financial burdens have increased the level of stress in our home has increased as well. We don't qualify for medical assistance, so we're navigating these things on our own. We have tried to use "serving the needs of others" as a mantra in our home to help us all remember to always be grateful and to never let our groaning be louder than our gratitude. Even as our life hasn't played itself out the way we hoped for or planned, we have tried to look for ways to bless others; knowing that there is more blessing in the give than in the receive. Humility has often led our family to look for ways to bless others. However, in our current circumstance, our humility has led us to a willingness to share our needs, with others, in hopes that they may be looking for opportunities to bless us. We ask you to consider our family's story and we appreciate any support and/or prayers you and your family may be willing to send our way.