R&D Salty Shakers
Dannielle Negus
Fundraising for Metro Detroit Great Strides
Dannielle Negus
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure. Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease.
Rilynne's Story:
Rilynne's Story:
We tried for 11 months to get pregnant and when we finally did, hearing the news terminate was very unexpected especially when we had no idea why. At our 20 week ultrasound, Rilynne had echogenic bowel. We were not told of these results until a week or so later when, over the phone, they told us echogenic bowel could mean that she swallowed blood, had CF, or has Down's Syndrome and that we should think about terminating. We met with specialists who then had me get further testing. I found out I was a carrier for CF. My husband then had to go get tested and we were told he had a 1 in 205 chance of having a rare mutation but they didn't think that was the case. Flash forward to birth, normal delivery no complications. She was born at 38 weeks and we went home. The pediatrician then called us and said the newborn screen flaged one mutation which we knew but that she would have to go to Mott for further testing which meant a sweat test. At 3 weeks old, she didn't sweat enough so we had to wait another month! In that time, everyone said she did not have CF until September 11th when the whole team of doctors came in after the test to inform us of the news. Rilynne has done so well considering all odds and the type of mutations she has. She is now 6 and on Trikafta and is thriving.
Dillon's Story:
Dillon's Story:
We knew the chances of having another CF baby but we took a chance. On the ultrasound at 20 weeks, it showed echogenic bowel just like Rilynne so we knew our odds. We had close monitoring and multiple ultrasounds. One of the last ultrasounds, the echogenic bowel went away! Shortly after I developed a chronic abruption and was put on bedrest at 30 weeks. I was hospitalized twice for serious bleeding then got sent home strictly on bedrest. At 34 weeks (that was the goal) I was dilated to a 3 so I was sent straight to the hospital. They didn't know how we both were going to do so I was close to the OR in case an emergency was going to arise. He was born perfect! Breathing on his own, doing all the right things for the first 24 hours. After that, the nightmare began. His belly started to blow up. They did xrays, enemas, labs, cultures and ended up making things worse. All that fluid was absorbed into his intestines and you could see all his loops through his skin. He was intubated and sent to Mott. Once he got there, more tests, enemas, contrast studies, and labs were done. They could not figure out what was going on, but they did rule out the top seven bad things it could possibly be (including CF). At 4 days old they had to do exploratory surgery to figure out what was going on. They said it was probably something simple where a band was wrapped around the intestines causing constriction. Worst case scenario he would come back with an ostomy, but they were highly doubtful of that. 2 hours later, he came back with an ostomy. Days later, he has pneumonia and part of his lung collapse from being intubated. 3 weeks later, he was diagnosed with CF. Lots of learning came after that for how to care for him once we got home. After 49 days, he came home! 3 weeks after that, he went back in to get the ostomy reversed and 3 days later he perfed, went septic, and almost didn't make it. They gave the ostomy back to him to save his life and, once he recovered, we went home with the ostomy again. Moving forward to this past January, the doctor was ready to reverse the ostomy again. He said that was a 1 in a million thing for why the ostomy failed (stitches failed) and it couldn't happen again. So we trusted him and had the surgery done again! Same exact thing happened and he perfed and went septic and got life flighted and almost lost his life. He got the ostomy back for the third time and after that I lost all faith. Faith in my beliefs, faith the surgeon, and faith in the hospital that cared for him. I took matters into my own hands and sought out other opinions and got a surgeon that would listen to me and my son's needs and after months of putting in the hard work and doing research, on August 20th, Dillon got his ostomy reversed and is now free of all bags!! He is doing very well now. We worked on weight gain and he is thriving. He will also start Trikafta when he turns 2 in June!
Both kids are doing very well now. We have our routine and we stick to it. Medications, breathing treatments, doctors appointments, labs, and everything else in between.
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
Both kids are doing very well now. We have our routine and we stick to it. Medications, breathing treatments, doctors appointments, labs, and everything else in between.
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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