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Team Hutch

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Team Hutch

Our journey with CF has been a rollercoaster. The first time I ever heard of cystic fibrosis was when I was a teenager and my older sister told me her boyfriend had it. I didn't even understand what that meant then. When he passed away due to complications I understood more but not truly. Then, in February 2014 I gave birth to a wild little man Declan. Who was born early (due March 17)and rushed away after birth to the NICU. My little man had a short stay in the NICU for blood sugar issues and needed a boost of oxygen for two weeks. When we got him home is when I received the call about his newborn screening test. He was positive for Cystic Fibrosis the Delta F508 mutation. While his pediatrician assured me that he is probably just carrier since he seemed to be growing fine, we went through tons of testing. Through all that we discovered he is also carrying the P67L mutation. While everything states those two mutations together are in fact disease causing, Declan has minimal symptoms. He is in the gray area for sure. He is now is labeled with CRMS.(CFTR related metabolic syndrome.) We don't know what this means for Declan as he grows but with the help of the CF Foundation and their search for cures and treatments we know whatever happens he will be ok.

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The CF Foundation is committed to providing a safe, inclusive, and healthy experience for individuals attending Foundation Events. Individuals attending CF Foundation events must abide by the Foundation's Attendance Policy and accompanying guidelines, which include guidance for event attendee's living with cystic fibrosis.