aviolentworld Posted January 30, 2014 Share Posted January 30, 2014 That time again. Just got my CF walk information for the Cleveland Zoo on 5/16 and figured it would be a great time to bump this thread. hey guys,my girls have a genetic abnormality called CFTR relatedmetabolic syndrome. They don't have cystic fibrosis, but could haveproblems and develop a milder form of it it in the future. I'm raisingmoney to help find a cure for Cystic FibrosisI'm a CF carrierand gave the gene to my girls. My wife has a tiny typo on her gene thatwhen paired with mine can POSSIBLY cause atypical CF (much mildersymptoms of CF or symptoms at an older age) - lung problems/infections,sinus problems, and pancreas problems and trouble gaining weight due tostickier than normal mucus in their bodies. They have borderlineelevated higher levels of salt in their sweat, but not high enough to beconsidered cystic fibrosis. The girls are monitored by a CF specialistevery 3 months, but so far are doing fantastic. They are happy, healthy,growing, and thriving. Click the link if you would like to know more about CFTR related metabolic syndrome. http://www.cff.org/AboutCF/Testing/Genetics/CRMS/ any donation is greatly appreciated. even if its a couple bucks!!! thanks dudes and dudettes. http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1774452&pg=personal&fr_id=3482 batman and eight1echo 2 Quote Link to comment Share on other sites More sharing options...
jhulud Posted January 30, 2014 Share Posted January 30, 2014 Man. Your girls are growing up so fast. Always happy to see you sharing pics and your home life with the rest of us schlubs here. aviolentworld and henster311 2 Quote Link to comment Share on other sites More sharing options...
henster311 Posted January 30, 2014 Share Posted January 30, 2014 donated my man. glad to see the whole family smiling, cute girls as always. wishing the best for all of you batman, aviolentworld and eight1echo 3 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted January 30, 2014 Author Share Posted January 30, 2014 Man. Your girls are growing up so fast. Always happy to see you sharing pics and your home life with the rest of us schlubs here. man Juan i'm pretty sure you helped name em.....haha Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted January 30, 2014 Author Share Posted January 30, 2014 donated my man. glad to see the whole family smiling, cute girls as always. wishing the best for all of you i love you man....also check your pm's. henster311 1 Quote Link to comment Share on other sites More sharing options...
batman Posted January 30, 2014 Share Posted January 30, 2014 there you go buddy. cheers! aviolentworld, henster311 and eight1echo 3 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted January 30, 2014 Author Share Posted January 30, 2014 there you go buddy. cheers! you really do save lives batman.....haha. thanks brother man. batman 1 Quote Link to comment Share on other sites More sharing options...
henster311 Posted January 30, 2014 Share Posted January 30, 2014 there you go buddy. cheers! nice man! batman 1 Quote Link to comment Share on other sites More sharing options...
cannonball Posted January 31, 2014 Share Posted January 31, 2014 Pitched in alittle. Have been going through the same kinds of things with my 3 yr old daughter. She has brain cancer and we found out she has a genetic disorder. So my thoughts and prayers are with your family. Take care! eight1echo 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted January 31, 2014 Author Share Posted January 31, 2014 Pitched in alittle. Have been going through the same kinds of things with my 3 yr old daughter. She has brain cancer and we found out she has a genetic disorder. So my thoughts and prayers are with your family. Take care! Oh man so sorry dude. I'm not good with the words but sending prayers to your family as well. Quote Link to comment Share on other sites More sharing options...
Brock N Roll Posted January 31, 2014 Share Posted January 31, 2014 Sent some deniro your way duder! aviolentworld and eight1echo 2 Quote Link to comment Share on other sites More sharing options...
eight1echo Posted January 31, 2014 Share Posted January 31, 2014 Donated what I could. Cute kids. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted January 31, 2014 Author Share Posted January 31, 2014 You guys do know the raffle hasn't started right??....hahaSeriously though I love this board. Its amazing what people do for someone they haven't met in real life. I am truly grateful for all of you and can't express my gratitude enough. edit. can't do a raffle. i guess it's considered gambling??? Quote Link to comment Share on other sites More sharing options...
cannonball Posted January 31, 2014 Share Posted January 31, 2014 I've realized how many good people are out there over the past few months. So many helped us out when we needed it the most! Children are amazing and we have to take care of them! aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted February 2, 2014 Author Share Posted February 2, 2014 here is a pic of the girls at the doctors getting there last sweat test. reagan has had 5 or 6 when she was under the age of one because she was flagged in her newborn screening. all the tests were inconclusive. they tested alexis at the age of 1 and she had the same results as her sister. the doctor wanted one last sweat test to see if there was any change. this test will test the amount of chloride in the girls sweat and anything <40 you don't have CF, anything >60 you have CF. anything in the middle is considered intederminate. the girls tested 49 and 52. Quote Link to comment Share on other sites More sharing options...
rooks Posted February 4, 2014 Share Posted February 4, 2014 My best friend growing up had CF, and still does, obviously. He's 26 or 27 now and still living life to the fullest. Great cause. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted February 4, 2014 Share Posted February 4, 2014 BAM! TAKE THAT CYSTIC FIBROSIS! YOU ARE NO MATCH FOR MY CHARITABLE DONATION! Quote Link to comment Share on other sites More sharing options...
veronicamars Posted February 4, 2014 Share Posted February 4, 2014 cute kids! i threw in a few dollars. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted February 4, 2014 Author Share Posted February 4, 2014 BAM! TAKE THAT CYSTIC FIBROSIS! YOU ARE NO MATCH FOR MY CHARITABLE DONATION! you are number 1 bro. cute kids! i threw in a few dollars. thanks a bunch. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted February 14, 2014 Author Share Posted February 14, 2014 bumping this thing. Quote Link to comment Share on other sites More sharing options...
controlthebleeding Posted February 14, 2014 Share Posted February 14, 2014 Hey brother, whens the deadline for this. giving again as per usual. but just waiting on my return to come in. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted February 28, 2014 Author Share Posted February 28, 2014 Hey brother, whens the deadline for this. giving again as per usual. but just waiting on my return to come in. we don't walk until may so you got plenty of time. Quote Link to comment Share on other sites More sharing options...
abovetheearth Posted February 28, 2014 Share Posted February 28, 2014 im going to make a donation soon. posting in here to remind me. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
CaliforniaNoise Posted March 1, 2014 Share Posted March 1, 2014 Donated what I could. CF is a tough disease...a cure would be revolutionary. Best of luck with the walk and fundraising! And your girls are completely adorable. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 4, 2014 Author Share Posted April 4, 2014 friday afternoon bumpski. Quote Link to comment Share on other sites More sharing options...
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