First off, thank you to everyone who came to the BJS proceeds night. It was a huge success. I do not have final numbers yet...but the manager has given me the "high-five". I wish I could explain the importance of how much raising funds means to us. Let me do a quick breakdown in somewhat lay-mans terms and see if I can get your attention. Please know it is currently 2:15AM and I may struggle a little bit :) In CF there are over 1500 different mutations that can cause CF. CF is genetic-meaning he has to get a mutation from both myself and Shane. About 85% of all CF'ers carry the same mutation, DF508 (delta-f 508). But would Caleb carry what almost all CF'ers carry-of course not. One of his mutations is known as G511D. Only about 3-4% of all CF'ers carry this gene. I know...don't worry...we do play the lotto. So with CF the chloride (aka salt) cannot move through the cells either because it is blocked off or the protein site is not there. I always try to think of a gross slug. If you put salt on a yucky-mucous looking slug it will pretty much melt away. Same with Caleb. If we could get salt to move through his cells, CF would either be manageable or be cured becasue he would not have the massive build up of mucous in his lungs that infection so easily get stuck to. Now for the exciting news. The doctor that we see at Children's, Dr. Frank Accurso, leads up a lot of the nation-wide research for CF (could we possible be any more blessed). Well, they have found a drug, an oral pill, that would essentially allow the salt to move through the cell. But they only worked on one mutation to find this out. You would think they would have researched the DF508...but they didn't. They found it on the G511D!!!!!!! Can you believe it!?!?!? So the story continues. To get a drug or therapy approved it has to go through rigorous testing (rightfully so) and it costs TONS of money. In Colorado there are a little more than 500 who suffer from CF, about 30,000 nationwide. There are more people in Colorado that suffer from M.S. than C.F. nationwide. So it is EXTREMELY hard for the Cystic Fibrosis Foundation to get pharmaceutical companies to help with the research. Not much return on their dollar. Bill Gates gave $20Million to help with the research of this drug and the CFF matched it. But we are still so far from getting enough money for this drug. I know it will happen-because God has been in complete control of this from the day we were blessed with Caleb. Caleb currently takes 9 meds per day when he is healthy, this one pill would replace 95% of those drugs. If this drug continued to be promising and it was released for Caleb-I would hit my knees with praise and joy and humbleness.
Shane and I had soon figured out why God had blessed us with Caleb when he was diagnosed. It was to give us our "assignment" in life. Our assignment is to keep our faith in Him, first and foremost. Secondly, to be a witness to his miracles so we can share our testimony. Wouldn't it be amazing if this drug came out and instead of one day having the "talk" (and I don't mean the s e x talk-I mean the "your sick" talk), I could tell him how he has been healed and he is just like everyone else because of the amazing gift that God gave the CF doc's?
This is why we will be nagging so many people to donate. Even if it is "just a dollar". If every single person gave "just a dollar" do you know how many dollars we would have?
You can donate at: http://www.cff.org/Great_Strides/MelissaNolan
Or you can mail me a check.
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