• 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)

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  • Monthly Archives

CF Stats

SOME CF STATS!!!

30,000 = the number of people living with CF in the United States

70,000 = the number of people with CF, worldwide

Disease occurs 1 in 3,500 births each year

1,4000 = the number of genetic mutations that can cause CF

1 in 31 = the number of Americans who carry a defective CF gene (most don’t know that they do)

25% = the chance that a child born to two CF carriers will have the disease

5 = the average life expectancy of a baby diagnosed with CF in 1950

37.5 = the current life expectancy for a CF patient today
(this dramatic increase is due to research funded by the Cystic Fibrosis
Foundation)
274 = the number of CF patients on the national organ transplant list, waiting for lungs

49 = the number of these patients who are younger than 18.

25 = the number of new drugs in the research pipeline that can further control or CURE Cystic Fibrosis

$800 million = the estimated cost of bringing ONE of these drugs to market.

$ dollars from the US govt. (it is considered an orphan disease, too few patience)

.90 = the portion of EVERY dollar donated to the CF Foundation  that will be used to fund the needed
research and development of these drugs.

0 = cures available right now

Today a friend stopped me and said, “I am sorry that I can not give much for a donation.  When I think of your story, it makes me want to give so much!!  We will be there to walk with you though.”  That conversation blessed my heart in an amazing way.  It brought me to tears!!  To know that people understand and that they care enough to stand beside us, give up a Saturday of their time to come and support us is….beyond words.  I feel so much love.  This road with Cystic Fibrosis is such a hard, hard road.   At times we feel so alone!!  I have felt the hand of God, through people, as we continue to work on our CF walk this year.  I feel like we really do have a group of people coming alongside us, backing us toward finding a cure for our little Rachel.  It is more than I can express with words.  I feel blessed!!  Thank you all for working with us, a cure WILL be found soon!!  Thank you for your part, the prayers, the donations, taking time to experience this road with us.

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