This has been a pretty good year for Rachel.  Her joy and zest for life is a daily blessing to us.  She participated in gymnastics again this year which she enjoyed greatly.  She doesn't fully understand the dual purpose this serves.  Not only is it fun, but it also does a great job building her body mass, and helping to make her lungs stronger with all of the jumping and running around.  We feel it continues to be an intrical part of her health. 

 

Rachel will celebrate her 11th birthday in July!  We can hardly believe it!  Although there is great joy in celebrating each birthday, there is an odd tinge of sorrow knowing that as she adds to her years, she is also adding to the damage occuring in those sweet lungs.  CF is a heavy burden for her every day and honestly, as she gets older, the burden is getting heavier in all aspects.  The emotional gravitity of cystic fibrosis weighs heavy on her by way of the time it takes and a greater understanding that her life is very different from those around her.  Rachel contines to struggle with slow growth and weight gain as a result of cf.  

This year has been particulaly difficult as she has yet to grow much in stature for the last sevearl years, and now her little sister is the same height.  Knowing her bmi and lung health go hand in hand, the push for more calories and a higher bmi is constant!  Rachel also works hard every day to maintain and try to improve her lung function.  She spends around two hours daily with her treatment regiment  (when healthy).  While we are hoping to see her be able to breathe easier, what she really needs is a cure.  She will continue to do her part...but, she can not do it on her own. She needs a CURE!  And, she needs your help to get there!

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This Fall we had the great joy of being asked to participate in our first clinical trial.  The trial we are involved in is the first one for the DDf508 that has the hope of dealing with the basic defect of cf in Rachel's body.  EXCITING!!!  While it will not fix cf in her body, it will go a long way to help her lungs not decline as quickly while we wait for a medication that will fully correct the basic malfunction of cf.  This trial has been extremely emotional for us.  While there is great hope, it is equally difficlut watching Rachel struggle beign poked, prodded and having to do procedure after procedure in the name of research.  She has been so very brave!!  We have watched her grow in maturity far beyond her age of 10 years.  She loves knowing that she is making a difference for those that come behind her despite the really hard days.  

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Despite the great progress we have witnessed first hand in the search for a cure,  the lives of people with CF are still cut far too short. We are connected to a community of people that struggle daily to breathe.  We watch the stories unfold of the fight for life and breath.  It is an amazing community, but it is HARD!  There still is no cure for this devastating disease.  So we pray!  And, we ask that others would join us in this fight to raise money to buy this vital research.  We are really getting close to a working "cure" (management) for this disease.  While the medication (Orakambi) that Rachel is trialing is good and offers hope of slowing down the progression of cf.   There are reports that by 2018 there will be an incredible therapy available to help actually TREAT Rachel (and over 90% of those with CF)!  That is AWESOME!!  That is just 2 short years away.  BUT...CFF needs money to stay on track to further develop and complete these clinical trials.  We pray that Rachel's lungs will be healthy enough so that she can greatly benefit from these new therapies when they get here.  Knowing that one illness or bacteria could jeapordize that, is a fearful thing.  But we press on with faith and hope in the Lord that her future WILL SOON BE DIFFERENT!

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Will you be part of that hope?  

Will you be part of our team and that difference for the future?