02/26/2025
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Everyone please take a minute to read about Noah and his family!
This year 2025, funds raised will go to this sweet boy 💙🙏🏼
From his mother Stephanie:
At my 17 weeks ultrasound, I was told my baby had bilateral renal agenesis (BRA) and his likelihood of survival was less than 1% due to lack of amniotic fluid in the womb. I was given no other option but to terminate. That was never an option for me and as soon as I left the doctor’s office, I began my research. I found facebook groups of other kidney families and asked around and finally found some options. After many phone calls to different hospitals around the US, many closed doors, insurance issues, etc, my husband, our two son’s and I traveled across the country to Omaha, Nebraska where I received my first amnioinfusion at 25 weeks pregnant. Knowing absolutely no one in Nebraska, we took a huge leap of faith. I was able to switch to work remotely but unfortunately my husband was not and we downsized to one salary. We lived in a hotel for a month & then found a nicely set up basement in a great family’s home. I received a total of 9 infusions and then ruptured prematurely at 32 weeks and 2 days pregnant. Noah was born 3 days later and was put on the highest oxygen support at birth. He advanced so much in those first two days and was ready to be transferred to the children’s hospital to get the care he needed. Noah has overcome so much in these last 6 months, many issues with his blood pressure, a line placement for hemodialysis when his peritoneal catheter began to leak early on, three hernia repairs, a fungal infection, a surgery for port placement, a surgery for gtube, & peritonitis. He is our miracle! He is our fighter! We call him our “little lion.” We, as a family have overcome so much as well, we have grown united but it has not been easy, away from friends, and family, and all of our support back home. Our boys have had really hard moments and having to juggle a baby in the NICU and two boys that had their lives changed in an instant has been the hardest thing I’ve ever had to do. I am so thankful that my son is alive and thriving & we are getting ready for discharge. Miracles do happen! We plan on staying in Nebraska until he receives his kidney transplant.
Please say a prayer for baby Noah!
Thank you.🙏🏼
