• My Family

    Blessed by the Lord for the Joy of family!!

  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

  • Recent Posts

  • Monthly Archives

  • Advertisements

A Mother’s Heart

A sweet friend of mine wrote this post today.  It brought tears to my eyes and put to words the joy and heaviness of my heart.  Many of you heard the great news about the first drug in history being able to correct the basic defect of (4% of) the people with a certain mutation of Cystic Fibrosis.  Breck’s illustration was totally on point.  While we rejoice and are excited for an amazing step forward for our kiddos, there is also great sadness that it is not for our little ones yet!  I know that today, this week, this month, and this year that Rachel will still battle the same struggles that come along with CF.  This news, this drug…well, it has no immediate effect on her life or her current fight.  It does bring great hope, but will the answers come soon enough?  From a mother’s heart…I want a C.U.R.E for my sweet Rachel, now!

Please read about this great illustration…it will move you to continue with our life-saving efforts to raise money for our kiddos.  We are definitely a step closer, but we can not, must not stop fighting for this future!!  With out new research,  Rachel, Bennet (Breck’s son) and 96% of the others that suffer from this awful disease will still struggle for life and breath!


Please check out her blog as she is a fabulous writer and fellow CF mama fighting for her kiddo!



From My Friend Breck******Will the helicopters return in time for us too?

 The cheers are reverberating throughout the internet.  My Facebook page is filled with chatter among my friends who have children with Cystic Fibrosis.  Everyone is going nuts:
The FDA approved Kalydeco, a drug previously known at VX-770.  So many in our CF community are ecstatic!   The day felt like it would never come but it is here.  For many, this is the hope they have been waiting for for their children.
As of today, those with Cystic Fibrosis ages 6 and up who have one copy of the G551D mutation gene now have access to a pill that will *dramatically* decrease their Cystic Fibrosis symptoms and has the opportunity to significantly extend their life.  It is not a cure.   But it’s as close to a cure for Cystic Fibrosis at we have ever seen.
But there’s a catch.  And it’s a big one, especially for me.  This miracle drug will help only 4% of those with Cystic Fibrosis.  And Bennett is not in that 4%.
Today, I felt the reactions of the CF mothers whose children will be helped with this drug.  So many of them lit up their Facebook pages with comments like, “What do you do when the FDA approves a drug designed to treat the underlying cause of your child’s rare genetic illness?  You scream and cry and laugh!” and “I’m shaking, crying and jumping for joy. Glasses raised for my child getting the chance to live a NORMAL life!“Oh, their joy!  I can’t even imagine what I would feel like to be in their situation – if I found out Bennett had the opportunity to slow down his disease and extend his life.  What an amazing feeling it must be!!But, as I read these comments and felt the excitement filling up the hearts of our little CF community, I found myself sort of sullen and withdrawn.

Why, I wondered, would I feel withdrawn and sullen on such a wonderful day as this – the day when so many of my friend’s children are getting a chance at living their lives without this devastating disease?  Wouldn’t I be dancing in the street and overjoyed for them as well??  Don’t I, being a mother with a child with CF, most understand the desperation and immense joy they feel to have something like this for their child?

And then an image came to me.

I can imagine this must be what it feels like to be with a group of people stranded on top of one’s house while the flood waters rise around us.  Everyone is in it together.  Everyone is wet, cold and frightened.  There is no guarantee we will be found.  But we try to hope.

In an effort to be found, we call out together and chant, “Help us!  We need help!”  We cry with each other knowing that we may not be saved in time.

And then, in the distance, we see a helicopter!  Someone see us!  They are coming!  We all cheer with anticipation.  Hooray!  We will be saved!   We watch the helicopter approach us, each of us begins to dream what it will be like once we are saved.

But as the helicopter nears, we realize, there isn’t room for all of us.  Not yet.  Not now.  And so, only a few of us get to aboard the helicopter.  We pat the backs of those who get to get on – and we tell them how excited we are for them.

But there is an emptiness that begins to fill in our hearts:  We wish we could go too.

The good news is that we have been found and may soon be rescued.  But the bad news is some of us must wait much longer to be saved.  Those of us who are left behind much watch the helicopter take off again, without us.

We each silently wonder, will the helicopter return in enough time to save us too?

I am so very happy about this drug.  The work of the Cystic Fibrosis Foundation is amazing and this drug is just proof that we are on the right path to finding a cure.  I know that there are other drugs in the pipeline that may hold the key to helping Bennett one day in the future.

But I must be honest that in the midst of the excitement, I can feel sort of disappointed that I’m not one of those mothers clicking the keys on my computer and placing on my Facebook status that my baby has a chance at a normal life, too.

For now, my son’s disease will continue to wreak havoc on his body while we wait.  And he is certainly not alone.  This is the case for the 96% of those with Cystic Fibrosis who must wait a bit longer for help to come.

But I also realize that I can’t focus today on how the helicopter just came and left – on the fact that this drug (as wonderful as it is) won’t help Bennett.  First, because I don’t want to take away from other’s joy.  But secondly, and most importantly, because…

I must remember that I’m not necessarily waiting on a helicopter (or a pill) at all.  My trust and hope is in God.  

I must remember that God is a good God.  He is a God who will leave 99 sheep to go find that 1 lost sheep.  God will not forget Bennett or my cries to him on behalf of Bennett.I must remember, even in my disappointment, that whether a pill comes in enough time for him or not, God has Bennett in his hands.  God will one day heal him too.  Until then, I choose to patiently wait.May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13


Amazing words, Breck!  These are many of the feelings that I experienced today.  Thank you for sharing your mama’s heart.  And more importantly, your faith that God is good and that He does care for our little ones.  Much love to you friend!

Thank you for taking the time to read about the fight of a mother’s heart.  God is faithful, so many have already given on behalf of Rachel.  This news is evidence that a dollar, or two really does make the difference!  But, please know that Rachel STILL needs your help to win against the foe of CF.  While this is a great step forward, this particular mutation(G511) was the easiest one to fix and now the research must take the knowledge that it learned from this, and apply it to a useful product for the other 96% of the people with this difficult disease.  Thank you for your continued prayers, time, money and for spreading the word about Rachel and her fight against CF.  We will put our trust in our Savor and the people that He brings to walk alongside us in our journey of faith!  We are eternally grateful for you!

Fighting Daily For My Baby,


*Please DONATE http://www.cff.org/Great_Strides/PaulAndTiffanyLeaders

*Please visit out http://rachelsraiseofhope.com

*Facebook page Rachel’s Raise of Hope

 Jeremiah 33:6 Behold I will bring it HEALTH and CURE and I will CURE them and REVEAL to them the abundance of PEACE and TRUTH!!! 



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: