Wednesday, May 7, 2014

Day 4 and 5... Parents and Great Strides

In honor of day 4 and 5 of Cystic Fibrosis Awareness Month, I thought I would share a little more about my parents and how I got started participating in Great Strides. Let me begin by saying that I will be expressing my opinions on how my parents raised me, and that may differ from others' views on parenting children who have cystic fibrosis.

As I mentioned in yesterday's post, I was not diagnosed with cystic fibrosis until I was 6 years old. I attribute that delay to the level of activity I participated in as a child. I was always bouncing, running, jumping, or flipping. It was rare to see me sitting still or just hanging out inside. Because of that, I really only showed signs of CF with digestive issues. My parents took me to multiple pediatricians trying to figure out what was wrong with me. The doctors assured my mom repeatedly that she was just an overly concerned parent and that I was just a sickly child. Thankfully, my mom would not accept that as an explanation for her child having so many issues. She stood up as my advocate and would not rest until she had an actual answer. The third pediatrician she took me to went through a lot of possibilities that could explain what was going on. Mom has told me that when he mentioned cystic fibrosis, and she did some research on it, she knew that was it. The doctor was not as sure though, but he decided to have a sweat test performed anyways. Sure enough, it came back positive.

 I cannot even imagine how my parents felt the day they received the news that I had a life threatening disease. How do you even begin to grasp the fact that your child's normal life just got turned upside down? How do you learn to accept the realities of your child having something as serious as cystic fibrosis? Not only was I diagnosed with CF, but my sister was also born with a serious heart defect. She is missing her right ventricle! When she was 3 years old (close to the time of my diagnosis), she had to have open-heart surgery. You always hear stories of people just shutting down after receiving bad news, but I am so grateful that my parents did the opposite. They took all of that terrible news and our scary health issues and chose to fight with everything they had.

That's when we got involved with Great Strides. We began that first year raising money to help fund a cure, and we have never missed a year. I used to go door to door in my neighborhood asking for contributions, and while I don't go around my neighborhood anymore, I do ask all of my family and friends for help.

While my parents worked extremely hard to raise money to find a cure for cystic fibrosis, they also did everything they could to make sure I lived as normal a life as possible. I was never put in a bubble. I played outside with my friends constantly, and it was a fight just to get me to come back inside. They made sure I did my treatments and took my medications, but they always encouraged me to stay physically active. I took tumbling, dance, and went to cheerleading camp as a child. When I decided that I wanted to be a cheerleader in middle school, my parents supported me fully.

I can't brag on my parents enough, because I am blessed beyond belief to have parents who back me up in everything I do and who encourage me to make the right decisions for my health. They were strong when many people would have thrown in the towel. They instilled in me the morals and work ethic that I apply in my everyday life. They have modeled for me what it looks like to be successful individuals who never give up even when things seem to grim to bare. I cannot thank them enough for everything they do.

Tuesday, May 6, 2014

Diagnosis and Childhood

I'm way behind, because it's day 6 of Cystic Fibrosis Awareness Month, and I have only posted once. So, I'm going to play catch up just a little bit and post for day 2 and 3. From the moment I could crawl, I was always active. I had one of those bouncy seats that hangs in doorways, and according to my parents, I was constantly jumping in it. Due to all of the exercise early on, my lungs really did not show the major symptoms of cystic fibrosis. My big issues showed up in the form of digestive issues due to my pancreas malfunctioning thanks to CF. I was born before it became the norm to screen newborns for the disease, so I slipped through the cracks when it came to receiving a diagnosis. My mom argued with multiple pediatricians about my health. She went through two that both told her she was just overly concerned and that I was just a sickly child. Finally, she got the third pediatrician to really put some thought into what was going on with me. He went out on a limb and decided to test me for cystic fibrosis even though he was confident that was not what I had. So, at the age of 6 years old, I was diagnosed with cystic fibrosis after going through a sweat test which is the procedure that is used to determine if a patient has CF.

I mentioned that I had digestive issues as a child, and I just remember excruciating pain dealing with those issues. When I look back at pictures of me as a kid before my diagnosis, I looked malnourished. I had the thin limbs with the distended belly due to my body being unable to digest the food that I was eating. I am so thankful for that pediatrician that actually listened to my mom and tested for cystic fibrosis.

Once I received my diagnosis, life changed pretty dramatically. We started going to a specialist for my disease, and I had to begin taking new medications and doing breathing treatments. I continued staying active, and thankfully, my parents chose not to put me in a bubble because of CF. I was always outside playing with the neighborhood kids, and it was like pulling teeth trying to get me to come inside at night. I struggled with the fact that I had to go inside earlier than my friends, because I had to fit in a breathing treatment before bed.

In elementary school, I was not embarrassed by cystic fibrosis, because it really didn't matter what people thought about me. I didn't let it effect what I was doing or who I was friends with. The biggest problem I had with it was that I had to go to the office everyday to get my digestive enzymes before lunch. That was always an inconvenience to me.

My childhood was great minus the hassles that cystic fibrosis presented. My parents allowed me to live my life as close to "normal" as possible. My family hit the ground running after I received my diagnosis. They knew they had to do everything in their power to fight this disease. We began raising money and participating in Great Strides that year. We have been doing the same thing every year since then. This year will be my 20th year with Great Strides! I plan on doing everything I can to fight the disease for not only me, but for every person who is struggling with it.

To make a contribution to the Cystic Fibrosis Foundation, just click on the picture below. :)

Thursday, May 1, 2014

Day 1: What is cystic fibrosis?

Today is the first day of Cystic Fibrosis Awareness Month, and what better way to celebrate than to have a different post about CF everyday in May! So, for Day 1, what is cystic fibrosis? If you go to, you will find a ton of resources about cystic fibrosis. This information comes straight from that site.

Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.

Quick Facts about CF
In the United States:
  • About 1,000 new cases of CF are diagnosed each year.
  • More than 75 percent of people with CF are
    diagnosed by age 2.
  • Nearly half of the CF population is age 18 or older.

In people with CF, 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.
  • Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
In the 1950s, few children with CF lived to attend elementary school. Since then, tremendous progress in understanding and treating CF has led to dramatic improvements in the length and quality of life for those with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of CF
People with CF can have a variety of symptoms, including:
  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections
  • Wheezing or shortness of breath
  • Poor growth and slow weight gain, in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty in bowel movements

It wouldn't be CF Awareness without me asking for a donation. Please help us continue to add tomorrows. Donate here: