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    Blessed by the Lord for the Joy of family!!

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    Albuterol (2-4 x)
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    Prevacid (2X)
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    alpha lipoid acid (1x)
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Love This Shirt

=)

Found this shirt the other day online and I couldn’t help but re-post it.  As I was thinking about my conversation with the doctors and CF team from last week…this is exactly how I like CF to work in our lives!  We know that it is there, but

I REALLY LIKE IT WHEN I CAN DENY IT FOR A WHILE!!!

I like it when life is just a matter of medicines and treatments and a bit of sickness avoidance/precaution (hand washing ect.) mixed in between.  That is a good day around here.  A day where we can feel like every other family in America…is a blessing!

CF denial also goes along with my desire to make this a reality –NO MORE CF.  This week CF has been in the news several times.  A new medication Kalydeco (previously known as VX-770) is applying for FDA approval.  This drug that is aimed directly toward the root of a rare CF mutation G551d present in only about  3-4% of the general CF population.  (The drug will work for a person that has at least one copy of this mutation.) This is NOT Rachel’s mutations, however it is still a REALLY BIG DEAL!  THis is not a cure, but a game changer!  I have heard it compared to insulin for the diabetic or an inhaler for the asthmatic.  While they still have issues to deal with, it now becomes manageable instead of fatal!  That is amazing to me.

As I watch the excitement around the CF community (especially for the people that have this mutation) it really is fantastic.  It is thought that this drug in combination (with a drug that is currently going through trial) will eventually be used for Rachel and the 98% of CFers that possess at least one copy of the DDf508 mutation.   And, while I am beyond thrilled for the people that this drug will work for, there is still that feeling of great sadness.  It feels like we are so very close to having a life changing drug for Rachel and yet at times it feels so far away.  The fact that they were able to find this drug and the same company is diligently working on the one for us, does bring great hope…and yet today I feel sad.  I know that the treatment is really a matter of money.  Right now the National CFF conference is happening in Anaheim where there are four THOUSAND dedicated scientists and CF health workers there learning, sharing, and expanding their hope for OUR FUTURE.  They have the technology.  They have the wisdom.  It really is now just a matter of tweaking it and having the money to make it work for the DDf508’s

AND
THAT
TAKES
MONEY!!!

So while I sit here tonight wearing my Rachel’s Raise of Hope tshirt from this years fundraiser…my heart is longing for a change.  I am EXTREMELY happy for the strides made, but it is still very difficult to know that Rachel and so many other people are struggling with this dreadful disease of CF today!

HOWEVER,
I do have hope…
once again, not in medicine,
but rather in the strength of the Lord to walk day by day in the strength that He provides!!!

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