Maddi was born with a genetic disease called Cystic Fibrosis (CF). Cystic Fibrosis affects primary the lungs and the pancreas. Cystic fibrosis(CF) is a progressive genetic disease that causes persistent lung infections that can lead to pulmonary failure and death. Maddi has worked hard to manage her disease with a joyful, "can do", positive attitude! Maddi's daily routine includes four breathing treatments and Chest PT and taking over 20 maintenance medications. She is hospitalized frequently and continues IV antibiotics at home after each hospitalization. Her health declined significantly over the past few years, and she was listed for a double lung transplant in February of 2018. The wait is starting to get long and hard for Maddi. She has big dreams for the future is ready to move forward towards those goals. Cystic Fibrosis can be a very isolating disease. The patients have to spend so much time managing their health that is doesn't leave a lot of time for socializing. Frequent hospitalizations contribute to the isolation as well. We are thankful for the CaringBridge website where we can keep family and friends updated and where you can send words of hope and encouragement to Maddi during this waiting time. Thank you for being on Maddi's team and for all of the love, support, and encouragement that you have given her and our family over the years! We are very grateful!
This beautiful song, Warrior, by Hannah Kerr reminds me of Maddi. Please take a listen or read the lyrics below:
https://www.youtube.com/watch?v=FNOS5FcgM04Staring down the face of fear
Gotta keep breathing
When the negative is all you hear
Gotta keep believing'Cause in the dark there is a light
Your truth it keeps on burning bright
Brave enough to fight the fight
And shout the battle cryYou'll never stop m, e I'm a warrior
When I fall down I get stronger
Faith is my shield, His love is the armorI'm a warrior (I'm a warrior)
I'm a warrior (I'm a warrior)
I'm a warrior (I'm a warrior)Every scar on my skin
Is a beautiful reminder
Of a moment when I didn't give in
And I walked through fire'Cause in the dark there is a light
Your truth it keeps on burning bright
Makes me brave to fight the fight
And shout the battle cryYou'll never stop me I'm a warrior
When I fall down I get stronger
Faith is…
