At just 4 months of age, Peter’s parents noticed a slight droop to one of his eyes. His pediatrician consulted an ophthalmologist who quickly ordered a MRI and lab work. Although Peter was a thriving newborn, the doctor was concerned there could a tumor compressing the nerve to his eye. […]

At 9 months old, it became apparent that something was abnormal about Taylor’s eyes. His family had done countless tests and retests — and the best answer they were given was “it could be” a number of rare genetic eye defects. They worked with geneticists locally who left them with […]

At 30 weeks into the pregnancy, we learned that there was something very wrong with Isaac’s kidneys. On a late Thursday afternoon, doctors told us that Isaac had severe dilation of his kidneys and bladder, but an exact cause and outcome were less than clear. His left kidney was badly […]

In May 2009, 5-year-old Braeden complained of a back and neck ache. Little did he know that he would soon be only the 12th case in the world of Atypical Ganglioneurocytoma, a rare form of cancer. Barely able to lift his head, his mother Tanya took him to his physician, […]

This is the story of Ezra as told to us by his parents, Ryan & Bobbie: The last thing a parent wants to hear is, “Your child has a rare genetic disease and will struggle with seizures the rest of his life.” However, that is what we were told when […]

Madison was born March 15, 2006 with Hypo Left Heart Syndrome or HLHS. HLHS is a severe heart defect in which the left side of the heart does not develop during pregnancy. Madison will need three heart surgeries or a new heart. The doctors at Children’s Hospital of Milwaukee decide […]

After being born a chubby 8 lb 6 oz baby, landing solidly in the 75th percentile for weight, Annabelle’s growth chart started to quickly take a nose-dive. As her parents, we nervously watched her weight fall to the 26th percentile at two months, the 12th percentile at 4 months, the […]