Wednesday, May 20, 2015

Cystic Fibrosis Month {#TeamTayTay}

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A little (ok, a lot) late in the game now, but I just learned that May is Cystic Fibrosis awareness month!!  What the heck is Cystic Fibrosis, you ask?  Read on.

Cystic Fibrosis (CF) is a genetic disease that affects the lungs, digestive tract, liver, pancreas and kidneys.  CF is caused by an inherited defective gene and causes decreased function of major organs due to the buildup of abnormally thick mucus.  In the lungs, this causes difficulty breathing, inflammation and repeated infection due to trapped bacteria.  In the pancreas this causes an inability to release the enzymes needed to break down and absorb nutrients, leading to malnutrition.  Patients often suffer chronic pancreatitis.



Why is CF on my radar?  When I was in gradeschool many years ago (ahem) I read Robyn's Book, a published diary of a young girl with CF.  I can't remember how it ended up in my hands, but I remember being so engrossed in her story.  Fast forward to April of 2014.  While interviewing potential nannies for our newborn babe, Hubby and I met a sweet young woman named Taylor who answered our posting on Care.com.  Our 20 minute interview lasted nearly three hours.  We sat chatting with Taylor like we were old friends, talking about her four younger siblings, her affinity for all things southern and country (hello!) and love of chocolate.  When we got in the car to leave I told Hubby, "I LOVE HER.  She's the one."  The following month I went back to work and Taylor began caring for Ayden.

In the 13 months that we have known Taylor she has become family.  We were included in her birthday celebration with her family and friends last fall and have spent countless hours just hanging out.  Ayden absolutely adores her and we love her to bits.

Taylor has Cystic Fibrosis.

Several times over the past year Taylor has endured painful bouts of pancreatitis.  These attacks occur without warning and last for several days, sometimes weeks, and leave her doubled over in excruciating pain.  Each flare up lands her in the hospital where she is put on IV nutrition in order to rest her pancreas.  She is given anti nausea medication and pain meds and is monitored while she waits out the storm.

Over the years Taylor doctors have tried a laundry list of medications, supplements, enzymes and treatments in order (hopefully) minimize her symptoms.  For a good while it seemed that things were working.  However have been different in recent months.  In the past seven weeks Taylor has been hospitalized three times.  She is currently in the hospital suffering greatly.  Her specialists have come to the conclusion that they have exhausted their resources here in California and are sending her to Boston for a specialized experimental treatment.  In order to do that she must be completely detoxed of all medications, including pain killers.  As I type this, she is going through the process.  It is nothing short of torture.

There is no cure for Cystic Fibrosis.  The purpose of today's post is to raise awareness and ask for your support for Taylor.  I know there are many many causes out there that deserve attention and research, and CF is certainly no exception.

Please keep Taylor in your thoughts and prayers.  Feel free to leave a note below and I will be happy to share them with her. :)  She needs all the encouragement and love we can shower her with!

Thank you!!  XO
#TeamTayTay



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3 comments:

  1. Been praying for Taylor and am sending her tons of love! πŸ’•πŸ’‹πŸŒΊ

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  2. Please let Taylor know she will be in our family’s prayers. I know this kind of suffering well from watching my husband go through so much and know how lonely, frustrating and hard it can be. Praying that the Lord gives Taylor a peace that passes comprehension and a remedy for her symptoms. I thought about her all day after reading this. My heart goes out to her. What a special friend.

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Thank you for taking the time to leave me a note. I read and appreciate each one and will answer here. XO