We prepped for our baby like any other family. Set up a nursery, packed our hospital bag, made our plans. Everything went beautifully and we welcomed our perfect baby girl Aurora on June 1, 2020. Little did we know that within 24 hours our worlds would be turned upside down.
The nurse came in to take Aurora for her newborn screening. I think a quick heel prick, they'll have her right back to me. I'm on video chat with her dad and big brother so big brother could see her before she came home. But the nurse didn't bring her back. She came in empty handed and said something wasn't right so they were sending her to NICU to get checked out. The next 2.5 weeks became a blur.
Our NICU check turned into a transfer to our local children's hospital in Orlando and surgery the following morning. We went that whole week wondering what happened to get us here. The following Monday we got our answer with her newborn screening results. Cystic Fibrosis. What she experienced was a muconium ileus or very simply put a bowel obstruction. This surgery left her with an ostomy for 4 months. Oct of 2020, Aurora has her second surgery to reverse the ostomy and has been unstoppable since!
Cystic Fibrosis is a rare genetic disease that is chronic, progressive and terminal. It affects about 70,000 people worldwide (30,000 in the US). Medications and therapies have come a long way and the average life expectancy for a CF patient was recently upped to 50! BUT! We still need a cure!!!
With Aurora's diagnosis, I feel it's my duty for her and for the future generations that will face this disease to get involved in a big way. Can you think of a bigger way than crossing the ocean for your kid?! (Not the whole ocean, but the Gulf Stream at least)
Crossing for Cystic Fibrosis is an endurance event starting in Bimini, Bahamas and ending in Lake Worth Beach, Florida. That's 80 miles of open ocean! I'm doing it, even if I have to hide in someone's boat and stow-away, I'm going to Bimini for Crossing in 2023 and I'd prefer to do it legally and in a way that makes an impact for my daughter and the CF community. So I'm asking for your help to get us to Bimini for #x4cf2023



