I was thrilled when I found out Joey and I were pregnant.  At 24 weeks I was scheduled for a level 2 ultrasound because of some concerns about the development of our son's legs. We arrived at the hospital not knowing what to expect, but during the ultrasound we could quickly tell that it wasn’t just his legs the doctors were concerned about.  The doctor came in after the ultrasound and informed us that our son’s heart, brain, legs, and bowels were not developing the way they should at 24 weeks.  Eager to get answers, we were scheduled for genetic counseling, an echo and an amniocentesis that same day.  We left the hospital that evening heartbroken and fearful of what the future held for our family.  We went home that night and decided our son's name would be Noah.

After additional genetic testing and an MRI our doctors diagnosed Noah with Joubert Syndrome (JS).  JS is a rare genetic condition, that is estimated to affect 1 in 100,000 newborns.  The doctor’s biggest concern for Noah was his heart so we continued with weekly ultrasounds until we were scheduled for an induction at 37 weeks.  Noah Joseph Goodeve was called to Heaven on June 16, 2023.  The moment Noah was placed on my chest, I felt a love that I had never experienced before. Everything from his mane of hair to his little toes was absolutely perfect.  Our time with him was cut short, but the 37 weeks I spent with him in my belly were the best 37 weeks of my life.  We were discharged from the hospital two days after meeting our handsome boy for the first time.  

Desperate for a way to honor our beautiful Noah, I decided that I wanted to run a half marathon and raise money in his name for the Joubert Syndrome & Related Disorders Foundation.  His Aunt Kiki and I will be running the Chicago Half Marathon on September 24, 2023.  Any donation made to this foundation will help support and educate families affected by Joubert Syndrome along with funding research, awareness and their biennial conference. 

Please help me support the Joubert Syndrome Foundation by making a donation through my page. The process is fast, easy and secure. Thanks so much for your support! Please don't forget to send this page to any friends you think might be interested in donating!