04/12/2018
Active Moms is supporting one of our own in the fight against Cystic Fibrosis. Our team, Holly's Heroes is participating in The Great Strides walk for Cystic Fibrosis this Saturday, April 14. Please consider donating or joining our team and help add tomorrows for those living with CF.
http://fightcf.cff.org/site/TR/GreatStrides/11_Carolinas_Raleigh?team_id=75159&pg=team&fr_id=6586
Holly' Story:
This amazing beautiful little girl, our Holly Brie, is the happiest, smiliest, most independent almost 2 year old you’ll ever meet! But something you may not know about her is that Holly has Cystic Fibrosis. It hasn’t been an easy journey for our family learning about this diagnosis and the medical world involved but with the strong support from our family and friends we continue to persevere.
“Your baby has Cystic Fibrosis, a chronic life shortening disease”
“There has been dramatic advancements in the treatment of CF, the average life expectancy is now 38”
I will never forget the day I heard these two sentences. It was the single most difficult day of my life. As I sat alone in the doctors office holding my perfect newborn baby at her 2week check up, the doctor informed me that my daughter had failed her newborn screenings and was showing indications of being positive for Cystic Fibrosis. A life shortening chronic disease that will likely cause her to pass away in my life time. That I will likely bury my own child. At that moment my entire world stopped, the doctor continued talking but I heard nothing, the room froze, my heart sank as I cradled my newborn baby in my arms looking down at her thinking “How could this be? This sweet little angel is nothing short of perfection. I don’t see anything abnormal, she shows no signs of having any disease, she looks just like my other daughter at this age...How could this be? In less than 1 minute my life had been flipped upside down and rattled into chaos. What/How was I going to tell my husband? The single most difficult, heart breaking day of my life. The next few minutes, hours, days, weeks+ were difficult ones filled with several hospital visits, invasive testing, blood draws, X-rays, medications, impatiently waiting for test results and lots of tears. Lots of tears. We barely knew anything of this disease and had so many questions. What is Cystic Fibrosis? No one in my family or Tommys family has ever had it, how did our baby get this disease? Why? What did I do wrong to cause this? How is this going to affect my baby’s life? How’s is this going to affect her older sister? And of course the ever lurking doubt of “are you sure these test results are true?” Our family immediately began educating ourselves on every aspect of the disease, researching how the diagnosis works, medication and treatments, what a childs life with CF may look like and how to best care for a child with CF. It took 6 long months to fully diagnosis Holly’s specific Cystic Fibrosis genetic mutations.
So what is Cystic Fibrosis? In short: Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breath overtime eventually leading to premature death. In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. Cystic Fibrosis has varying gene mutation combinations and is different for every person.
Holly is blessed to be enzyme sufficient which means her pancreas works properly digesting nutrients and she currently does not need daily supplements. In order to keep Holly’s lungs clear of mucus we perform two 30minute sessions of chest PT daily. This PT time is actually a relaxation period for Holly right after she wakes and right before falling asleep. We have doctors appointments at UNC Hospital every 3 months for the rest of her life. These appointments are very important for checking her lung cultures and assuring bacteria is not growing. Holly has had a few lung infections which were able to be treated with intense rounds of medications and thankfully she has not needed to be hospitalized for an extended period.
On April 14th our family is participating in the Cystic Fibrosis Foundation Walk for A Cure and we would love for you to join our team Holly’s Heroes! This is a fun 3mile walk starting at the Chapel Hill Community Center Park and walking along the Bolin Creek path. There will be music, lawn games, bubble machines and snacks provided as we raise funds and awareness to help continue the research for a Cystic Fibrosis cure. If you have the ability to donate to our team we would be eternally grateful as your donation goes directly to helping fund research for a cure for Holly and so many others who live with this rare disease.
This disease will not define our HollyBear, rather it gives us all a much deeper appreciation for life. We are blessed to have this amazing child in our life who has taught us so much about what it means to be a fighter! She has taught us to always keep smiling because life is a beautiful thing and there is so much to smile about ❤️
2018 Great Strides Chapel Hill
