CF is a genetic disease that occurs in many people, including my duaghter, Kyra. Kyra has not been admitted to the hospital since 2017, but this is a little story to give you a peek into our life and struggle.
She has been hospitalized SO many times because of lung infections and malnutrition. When she was just about a month old, they put a G-Button in her stomach, which is a feeding tube. This was to help her gain weight. She had that baby until she was, like, 6! When she was about 4, they put a port in her chest because her veins were too scarred and weak to maintain an IV or a PICC line. She went through about 3 of those, but we got the last one out in 2016. Since then, Kyra has been admitted 3 times.
While it's never easy to watch your child go through tests and procedures and recoveries and just generally feeling like total crap sometimes, the hardest was one year ago. On April 8, 2017, after an amazing day full of wedding festivities for my best friend, Kyra had a nasty cough on the way home. She went to spit out **what we thought was** phlegm, but she freaked out. I looked at the napkin and realized it was blood. We went home, immediately did a breathing treatment and tried to be calm about the situation. This had happened once before, a few years prior to this event, and her docs thought it could have been just some irritation in her airways. It didn't happen at all on Sunday, but I had called to leave a message for her docs. On Monday, April 10, I got a call from Kyra's school saying that she was coughing up blood. My heart dropped. I left work right away, picked her up and proceeded straight to the "Emergency room" where we waited for over 5 hours in the waiting room to be seen. When we left the local ER **A.M.A** we went home to pack a bag and go to Denver...which is where all of her admissions take place. We were there for a little over a week this time.
That trip to the hospital taught me a lot. It taught me that my kid is even more amazing and resilient than even I knew. It taught me that "hemoptysis" is not totally rare in CF. It taught me what "chronic disease" really meant. We have all kinds of bacteria in our body, but Kyra's bacteria causes so much damage. It's not fair. Through this, though, Kyra has continued to blossom into such an amazing person. She's in 8th grade. She is the first chair saxophone in the concert band at school, she is in the color guard in marching band, she loves to act, she builds cranes in design and engineering, she writes some killer raps and poems, all while maintaining a great GPA. She's not letting her disease keep her down, so I don't have the right to let it keep me down.
Short story long, we need your help. We need to find a cure so that Kyra and others with CF can do the things they love without worrying about whether this cough is going to contain blood. We need a cure so that I can stop playing the "Let's-Total-The-Pharmacy-Receipts-To-See-How-Much-Insurance-Saved-Us-This-Month" game. **For March, it was something bizarre like $36,000** We need a cure so my kid can grow up and have a life. Live the life she's working so hard for.
So please help us! Donate! Help add more tomorrows for my daughter and other people with her condition. CF Sucks, but you can make it suck a little less! With your donations and support, a cure WILL be found. Please help us out!
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.