The story of Corrie
When my son Levi was born in June 2015, I was blessed with the most amazing miracle God could ever have given me. Even though his head circumference was greater than the 99 percentile throughout the third trimester of my pregnancy and as he grew, he didn’t have hydrocephalus. The doctors chalked it up to him having a really big head, just like his dad.
Levi truly was perfect in every way. However, within the first few months we realized that his normal baby spit up was something more severe. My son who was born at 9 pounds and 13 ounces had dropped down to below the 2 percentile in weight by his third month of life. After several different doctors, he was diagnosed with gastroparesis. Even after he began to gain weight again with the proper medication and treatment, we noticed he was still developmentally falling behind in all of his milestones.
After seeing several other specialists to test everything from his eyesight, to hearing, to making sure that he wasn’t having seizures, we were at a loss as to why Levi was so far behind other children. My doctor recommended I take him to a geneticist. Levi was diagnosed through blood work with PTEN Hamartoma tumor syndrome. We finally had answers, but our journey has just begun.
Two months after Levi’s diagnosis, we found out we were pregnant with our daughter Beverly. Like Levi, during the third trimester her head circumference was off the charts larger in the 99th percentile. When she was born we immediately had her tested, and she also came back with the same mutation. By this time, we were certain the mutation came from my husband. He was tested and confirmed as well.
In the past few years we have dealt with Chiari malformation’s, pseudopapilledema’s, benign colon polyps, nodules in lymph nodes that had to be removed, Tonsillectomies, and a whole slew of other procedures. Levi will be five in June, and Beverly just turned two last October.
My amazingly beautiful and strong family have a long road ahead of us. But knowing that we have a community of others who share in living with this rare disease makes the fight more bearable. Together we are stronger, and my family is so worth the fight!
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