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Unbelievable and Yet…

I came across a story a few days ago that completely broke my heart.  Mother given life sentence with mercy for 3-year-old’s death  – Putnam County – Charleston Daily Mail – West Virginia News and Sports –. It was that of a 3 year with Cystic Fibrosis who lost her life due to the lack of care from her overburdened mother.  This mother failed to get her medications filled and when she did, often times didn’t give them to her.  (After the month that we have had trying to get Rachel’s medication, this story is particularly heartbreaking, because I have struggled GREATLY in obtaining what we needed for her health.)  Also, this mom did not keep up with taking her child to her CF appointments.  Even as I type this it puts a lump in my throat.  I know that CF is tough!  It is exhausting emotionally, mentally and many time physically.  But, still, why didn’t someone somewhere do something to save this little girl’s life?  It is beyond my understanding.

I still remember like it was yesterday the day that we were told of Rachel’s CF diagnosis.  We initially had no reactions, because we were very unaware of WHAT CF was, however, once we learned a bit of what it was it was completely devastating.  I also remember one of the sweet nurses coming to us and reassuring us that Rachel was so lucky to have us as her parents, and telling us of others that she knew that were not that lucky to have parents that were aware and proactive.  Little did I know the dramatic life change we were getting ready to embark upon, that she would be referring to.  We got this great encouragement from this nurse and many others, but our sweet friends also came alongside and told us the famous (but oh so not true) statement, “God doesn’t give you more than you can handle!”  That is NOT TRUE.  There is little in light of CF or life for that matter, that I have ever felt like I could handle.  It is ONLY BY GOD’S GRACE that we stand!  This disease is hard!  It is by faith that we walk in His strength to face the trials.  I am not that strong, but He is!  He shows Himself in our weakness and let me tell you, there is nothing like the disease of Cystic Fibrosis to remind you how weak you truly are!  As we have gotten more used to the burden of CF, we are better able to cope, but it HAS. NOT. FOR. A. DAY. GOTTEN. ANY. EASIER!

When I think of the struggle that this young mom must have faced, my heart breaks for her.  I don’t know if anyone other than a parent of a chronically ill child could possibly have sympathy for her.  Probably, more specific a CF parent, who knows the daily struggles and trying to balance life, treatments, and medication.  CF as much as we desire to have it not control our lives, it does take precedence over many parts of it.  From the moment we rise in the morning with medications, treatments, high calorie foods, germ avoidance, washing and sterilizing equipment…and that is all usually before 9 am, to the moment we finish treatments and fall into bed in the evening, it is part of what we must do.  The difficult part comes in knowing that this has to become part of your life.  You don’t get to take a break tomorrow, or next week or even next month.  IT IS JUST WHAT YOU DO!!  We must!  We do it because we love our child and want the best for her, but that does not mean we like it or find it easy.  Every CF parent that I have ever talked to shares this same enormous burden, the are and attempt to slow down this disease is astounding.  A child without CF requires a lot of care, and one with CF…well let’s just say there are lots of moments to be together.

Although, I can understand the mom feeling overwhelmed, I can not imagine sitting and watching your child suffer and not doing anything.  I have watched Rachel when she has been sick before and it has been one of the worst experiences of my life.  I have counted her respirations, and syringed water in her mouth to keep her hydrated because she was coughing so hard.  I have done treatments around the clock and prayed all the time in-between for wisdom to know what to do.  I have watched her cough so hard that she vomits only followed by another coughing fit where she could hardly catch her breath.  These are truly horrible images and memories that spur me on to do all that  I must to keep her as well as I can.  In the report the judge sentenced the mom to a 15 years “mercy sentence”.  He said that he did not think she neglected her child with malicious intent.  But, the judge also said he couldn’t forgive Wright for the suffering she caused her daughter. He said his past experience as an EMT made him very aware of how the girl must have struggled for her last breaths.  That thought brings me to tears.  I can not imagine, nor do I ever want to imagine that thought!  I chose to fight for Rachel…I will fight for her every breath!

When I read this story, it was a clear reminder of what parents 50 years ago must have had to deal with.  I know the statistics that come from the early days of parents getting together to try to fight this disease.  Those parents knew that their CF child would most likely not make it to school age.  No matter how hard they tried, their fight was still very hopeless, and yet they fought.  I am so very grateful for medication, science and research!!  I know this would be our story too, if it were not for the amazing research that has revolutionized CF.  Just yesterday I read a blog from a CF patient on one of our support groups.  She just started one of the combination trials for the Vertex drug.  The CFF works diligently at finding drug companies that are willing to take a financial risk on the only 30,000 CF people in the US.  They research, and create drugs that will extend CF people’s lives.  This vertex drug is just one of many…however, it is currently the most exciting!  This is one that has the potential to drastically change life as we know it by treating the underlying defect rather than just the symptoms!  And one of the best parts**IT IS A PILL!!!  While I will continue to do everything I possibly can to aid in Rachel’s health and well being, I will work hard for those children that I don’t know too!  Currently, I am fundraising and praying like crazy that this is the drug that truly does change Rachel’s future.  Please join me in our fight to raise the money to change CF forever!!  Go to rachelsraiseofhope.com to find about different ways that you can help with Rachel’s Raise of Hope fundraising efforts.  WE NEED A CURE!!!  30,000 people (and their 60,00 lungs) will thank you!


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