Saturday, March 21, 2015

What is Cystic Fibrosis?

After diagnosis what's next? Research. SO much research, because knowledge is power. knowledge is understanding. knowledge is hope. knowledge finds a cure.


According to the Cystic Fibrosis Foundation, CF is an inherited disease which causes certain glands in the body to not work properly. Exocrine glands normally make thin secretions like sweat, mucus, tears, saliva, and digestive juices.  In CF, exocrine glands (except sweat glands) make mucus that is thick and sticky. This sticky mucus plugs the ducts and other passageways which causes problems with breathing and digestion. CF also makes the levels of salt and potassium in sweat way to high which causes problems during super sweaty times. (This is what makes R taste like the ocean.)

FACTS:
  • An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.
  • Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
  • Clogs the lungs and leads to life-threatening lung infections.
  • CF is not contagious.
  • Does not affect the brain.
  • Has no cure at this time.
  • The average lifespan, at this time, is 36.
  • One in every 31 Americans is a symptomless carrier of one copy of the gene that causes CF.
  • If Seth and I ever decide to have another child, he or she will have a 1 in 4 chance of having Cystic Fibrosis.
  • Every child with CF got genes for this disease from both the mother and the father. So a CF gene mutation is present on both sides of the family.
  • R can do ANYTHING that everyone else can do.
  • The more active people with Cystic Fibrosis are the healthier they will be.

So far this is basically what we know: CF is a genetic disease that has no cure and requires a lifetime of treatments and medications. R got CF because both Seth and I are carriers of the gene. If we ever have another child he or she will have a one in four chance of having Cystic Fibrosis. R can and will live a normal life and he will be able to do anything that he wants to do. He will attend school, play sports, have friends, and eventually girlfriends. R may have to miss school and events due to hospital stays and/or lung infections, colds, and etc. He will probably develop a consistent cough, which may cause some stares but we can assure them that CF is not contagious. Roanan will be a respectful, caring, and loving fellow. Him having CF will not change his morals, responsibilities, or character. However, it may make him cherish life more, he may enjoy the simply things more than everyone else, he may live life to the fullest and even riskier than the average Joe. R may inspire others to love life just like we imagine he will. Our job as parents is to raise R as a normal little man, who loves God and his family, who cherishes life and has makes plans to achieve his dreams. We will teach him about his disease and how to rebel against it everyday. We will love him with every breath in us, and we will make sure he never forgets it. We will try to explain to him that we don't have to understand God plan to put all of our love and trust in him. We will teach him to fight for a cure on a daily basis, and he will teach us the true meaning of love. He will show us the definition of Hope and Happiness.

He is our Inspiration.

He is our Dream Come True.

He is our Hero.

1 comment:

  1. We love you all and are praying for Roanan. God still answeres prayers.

    ReplyDelete