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. (basically they struggle with gaining weight which then makes them at high risk when they get infections in their lungs)
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.
My Princess Warrior
Meet my beautiful daughter, little Miss Princess Warrior. You would never know by looking at her that she has Cystic Fibrosis. We found out through the new born screening that she had the mutations of the Double Delta 508, the most common of the CF mutations.
I WAS DEVASTATED.
I was SHOCKED.
I don’t know what else I can share on how I felt when I heard my daughter had a life-shortening disease. LIFE-SHORTING. I was already struggling with my eyes!
How will I take care of her?!
How can I be that strong mother that she is going to need??!
How long will she live???
What is going to happen know??
All these things above and more are what I was constantly thinking about. I think about them time to time now but because of the family and friends that have supporting us and because of the amazing advancements that researchers are having…I’m feeling pretty confident that they will find a CURE in my daughter’s lifetime. I am praying!
We gave her a name that means “Female Warrior” because we live in this crazy world. We knew she needed to be strong, to stand up for what she believes in and we hope and pray she will be a warrior for Christ. Little did we know that she would need to be a warrior for her health too. How awesome is that?!
Resources
Cystic Fibrosis Foundation – Donations, lots of information regarding CF, videos, treatment info, etc
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Team Princess Warrior – Donate to our Great Strides Fundraiser Team Princess Warrior on behalf of Jadzia! All funds go to the Cystic Fibrosis Foundation.
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Cystic Fibrosis Research, Inc (CFRI) – is a non profit organization, up to date information regarding CF
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Dear CF – The relief of symptoms and the preservation of health amount people with the genetic condition Cystic Fibrosis. They believe in a holistic approach, mind body and soul.
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www.TipsForCFParents.com – LOTS of great information, pamphlets, etc to help walk with you trough this different kind of life.
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Introduction to CF Infant Care – This page has a collection of videos on how to give your baby enzymes, Chest Physical Therapy (CPT), Nutrition, How to give your infant/baby enzymes, and much more. These helped me a lot!
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CF Bloggers
Love to Breathe – This was one of the first blogs I came across when I was searching for information regarding CF. I wanted to see that there were others who were surviving and living normal lives. Somer Love is proof of that. She is in her 30s! She also just started couching younger people with CF through what she calls FTTT (FaceTime/Treatment Time). She uses a webcam while completing treatments with other younger members of the CF community simultaneously through video. What an amazing support she is! I hope my daughter will do a FTTT with her 🙂 Follow her blog and be inspired.
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A Note To Parents of Newly Diagnosed CF Baby,
Take a DEEP breath. This is NOT the end of your world or your precious baby’s world. You WILL be faced with challenges, be overwhelmed, you’ll have good days and bad days but you are going to make it. You will soon become a pro and this new life of medications, therapies, doctor visits, enzymes, smelly poops, coughing, nebs, and it will all become second nature. Give it TIME. Have HOPE!!
It was only in the 1950’s that children with CF were not expected to live long enough to attend elementary school. That’s insane to think about. Why? Because now days about half of all people with CF in the US are 18 and older. They are living well into adulthood and having healthy lives, pursing careers, getting married AND having children of their own. That’s something to give you HOPE. A cough will never be the same anymore. As a mother myself, I’ll probably always stress about my daughter’s weight and health but I do that with my non CFer too…..but its just going to be different because of the risk of infections in their lungs.
All that I am trying to say is, You are not alone in this. God’s in control. We are here to help! There are tons of support out there and I would love to help you find it.
Any questions, please just ask me.
Much Love
Andi