Cystic Fibrosis

What is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease.  It is progressive, and degenerative  that CURRENTLY has no cure and is life shortening.

CF is a defective gene and its protein product causes the common mucus in the body to be unusually
thick,sticky and hard to move. This creates a multitude of problems throughout the body including -
difficulty breathing and chronic lung infections leading to scarring and damage, sinus infections,
poor growth, diarrhea and or bowel obstruction, diabetes, liver and pancreas problems, (obstructs 
the pancreas and stops natural enzymes from helping the body break down and absorb food), are just
some of the issues that afflict CF patients.

  • CF effects 30,000 children and adults in the United States and 70,000 worldwide.
  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • The predicted median age of survival for a person with CF is more than 37 years.
How does it affect us???
Sister Pester's Miss Sassofrass in fact has Cystic Fibrosis.

Summer of  2000 - Miss Sassofrass Pester was born after 29.5 hours of labor. She was pint size 6lbs 6oz and only 18.5 inches long at full term. (At the time Sasso was one of two kiddos in our family, we now have 5). She had a rough road those first couple of years and was labeled failure to thrive, (doctor's were unable to solve her medical condition). When she was 3.5 a new doctor solved the mystery. Miss Sassofras had a genetic disease called Cystic Fibrosis. She had relatively good health following the vigorous medication and therapy routine until this last year when her health plummeted and she spent 30 days total inpatient and 45 days total receiving IV antibiotics. She has had countless procedures, needles, deep throat cultures and lots of uncomfortable things she has had to endure in her lifetime.

Miss Sassofrass has Cystic Fibrosis. It sucks. BUT it is not her.

Miss Sassofrass is amazing. She is so full of life, love and compassion,she makes you want to be a better person!

Sasso has the funniest sense of humor, she can make anyone laugh.

Miss Sassofrass loves horses (she wants one of her own more than anything), she loves doggies (she got an early bday present an alaskan malamute she named Shasta), and she is a little fashionista with her clothes.

Now take a peakskie at this brave girl and her world through these random pictures....

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