Harmony:
1. The combination of different musical notes
played at the same time to produce a pleasing sound.
2. A pleasing combination or arrangement.
Dissonance:
1. A mingling of discordant sounds; a clashing.
2. A lack of agreement.
I was a month old when I was diagnosed with CF.
For much of my life, CF and I lived in complete harmony, without any epic
moments of dissonance. CF and I grew up together, very seldom
getting in each other's way. For the most part I never thought about CF
and what it really meant to my life. Sure, my childhood might look
different than most kids,' but it was still wonderfully filled with school,
swimming lessons, birthday parties, basketball camps, little league, and
slumber parties. Looking back at my childhood I realize how many
wonderful people I was surrounded by and the memories I will forever hold dear.
I wouldn't wish for any other childhood. It has made my life what it is
today: a composition of harmony and dissonance. A beautiful song.
When I was born newborn screening for CF was not
mandatory. Because early detection is so vital to the success of treating
CF, newborn screening is now mandatory in all 5O states.
How is CF diagnosed?
"Sweat
Test — If
a person shows symptoms of CF or if a baby has a positive newborn screen for
CF, a doctor may order a sweat test. This simple, painless test is the best way
to diagnose CF. It measures the concentration of salt in a person’s sweat. A
high salt level indicates CF.
Newborn
Screening — Newborns
screened for cystic fibrosis can benefit from early diagnosis and treatment,
which can:
•
Improve growth;
•
Help keep lungs healthy;
•
Reduce hospital stays; and
•
Add years to life.
Genetic
Carrier Testing — More than 10 million Americans are symptomless carriers of the
defective CF gene. This blood test can help detect carriers, who could pass CF
onto their children. To have cystic fibrosis, a child must inherit one copy of
the defective CF gene from each parent.
Each
time two carriers of the CF gene have a child, the chances are:
•
25% (1 in 4) the child will have CF;
•
50% (1 in 2) the child will carry the CF gene but not have CF; and
•
25% (1 in 4) the child will not carry the gene and not have CF"
If my life were being written as a musical
composition, the sweetest melodies and harmonies would come from those
relationships and memories that live within me. Each of you is a
beautiful note in the song of my life that is continuing to be written.
What beautiful harmony is your life making?
Thank you for the amazing response to this blog. I am so
incredibly humbled by the love and support you have each so graciously out
poured. Love to you all!
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