• 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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We have two more days to order
Rachel’s Raise of Hope t-shirts!!

Each year we have used the money we have raised from our shirts to directly support our effort to buy research towards a cure through the Cystic Fibrosis Foundation.  We know that research is the most viable option that we have of extending Rachel’s life (other than God divinely healing her…which He is more than able to do).

Treating Cystic Fibrosis is a very expensive disease.  Up until now we have been able to weather the financial burdens of CF by having great insurance, living frugally and spending resources carefully.  With the addition of the feeding tube and formula (not covered by insurance) things have gotten a bit trickier.  We have struggled to find a solution to the cost of the feeding tube formulas in the past couple of weeks, and one thought that has entered our minds was using the proceeds from the shirts this year to help offset the cost of this expensive formula (somewhere between $600-$900 a month out of pocket).  Several other cf families, social worker at the hospital, and dietician have all encouraged and suggested that we initiate our shirt money for this year towards formula until we find a better working solution.

While we value and appreciate research to the highest degree, we also know that we must do what we can to ensure health today for Rachel!  So, in full disclosure, if you would like to have your donations/costs from shirts go towards research, we are overjoyed to direct it there,  please let us know this is your desire.  If you are okay with us using the money from the shirts to help Rachel via a medical fund, we would be humbled and grateful.

God has been faithful in taking care of each and every one of our needs, and we have no doubt that He will continue.  This seems to be a wise immediate solution to the issue at hand. Thank you for being part of the team of people fighting for my Rachel!

Here is the link.  Feel free to email us at jcleadsus@msn.com with questions. https://docs.google.com/forms/d/e/1FAIpQLSe6Zzs7ggnJZx6nYQY39gUYfDSmcXqR_QwBJ5CliC7N1qVsAg/viewform?c=0&w=1

Great Strides Walk- May 20th! 

Sign up below

This is quite simply one of Rachel’s FAVORITE days of the year!  

Looking forward to see you all there! 




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