A total of 7 posts are filed under NICU
Ten Years Ago We Were Told His Disease Was “Not Compatible with Life.” They Were Wrong.
During our first ultrasound scan we were told there was a problem, the scan four weeks later confirmed a chromosomal anomaly, one or a… Continue Reading
Hurler Syndrome: My Son is My Hero
My name is Emily Davis. I got pregnant with my sweet boy in November of 2013. We named him Isaiah Leon-Charles and he made his arrival on… Continue Reading
Piper’s Story: Premature Birth Reveals Metopic Craniosynostosis, Chromosomal Deletion
This is a story of a very special little girl. It was at my 20 week ultra sound  that my boyfriend and I  found out we were going to be… Continue Reading
Brave Bennie’s Battle with Chromosome 14Q Deletion
Bennie has been fighting for life since 6 weeks after conception. Mom was gravely ill and hospitalized the whole time. When Ben was born, he… Continue Reading
A rare genetic metabolic disorder centered in the liver, Glycogen Storage Disease can cause low blood sugar, an enlarged liver, failure to thrive, developmental delay, elevated lactate and uric acid levels in the blood and urine, and seizures.
With an Organ Impairment and Five Hospitalizations Due to Glycogen Storage Disease Type 1A, Landin Waits To See A Liver Specialist
Landin was born on June 15th 2010. It  was an amazing day, yet even at that time, we knew something was wrong. We immediately noticed he… Continue Reading
Bella has Phelan-McDermid syndrome, a rare chromosomal disorder in which a part of chromosome 22 is missing.
Bella Means Beauty, And Phelan-McDermid Syndrome Can’t Take That Away
Bella was born on a very cold, snowy day. I remember thinking, “Why isn’t she opening her eyes?” But no one seemed concerned, so I… Continue Reading
A Family’s Fight Against Carbamoyl Phosphate Synthetase Disease
Madison Sonja Van Leeuwe lost her battle against Carbamoyl Phosphate Synthetase in Madison Sonja Van Leeuwe was born on Christmas Day 2009… Continue Reading