Ethan: a little guy with a big heart, and a Richmond mom to fight for him

by Laura Hamilton, Richmond mom-of-four, blogger at http://www.lovemy4littlehams.blogspot.com/, Ethan’s champion

Editor’s note: I met Laura in the spring of 2009. We were launching our first March of Dimes March for Babies team, and her infectious enthusiasm for Ethan’s cause sucked me in like a big ol’ balloon. This is a mom with heart. We were thrilled to walk with “Team Richmondmom.com for Ethan” this year, and raised over $3,000 for the March of Dimes! Laura’s story–and energy for Ethan and all of her kids–is amazing.

Ethan was born 6 weeks premature suffering from multiple birth defects. Ethan spent the first 5 weeks of his life in the NICU. He suffered from hypotonia (floppy baby syndrome), hydronephrosis of both kidneys, SVT (fast heartbeat), feeding issues and high levels of copper. Ethan was a medical mystery. Genetics doctors performed multiple tests on Ethan in the first year of his life trying to diagnose a disease. During the first 14 months of his life, Ethan endured 5 surgeries and multiple hospital stays in the Pediatric Intensive Care Unit. Ethan has significant developmental delays. He sat up alone at the age of 11 months, begin eating solid food at the age of 15 months and started commando crawling at 16 months.

Today Ethan is almost 17 months old, he can not crawl, walk or talk like typical toddlers his age. He has a contagious smile and laugh that comes from the very bottom of his belly and puts Santa to shame.

Ethan has just recently been diagnosed with Mitochondrial Disease. Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person is severely compromised.

Ethan and his family will soon be traveling to Atlanta Georgia to meet with one of the leading Doctors who specialize in Mitochondrial Disease. Ethan will undergo a live muscle biopsy and multiple testing to begin treatment for this disease. Today there is no cure for this disease.