Tuesday, July 14, 2009

Reese's Story

Reese was born on January 26, 2006 after an uneventful pregnancy and beautiful birth. All was “normal” until April 14, 2006 when he had his first seizure. It was small; he looked like a deer in the headlights and his right hand splayed out. Within a week he was having “grand mal” seizures. When he had four in the front carrier at his brother’s kindergarten round up, off to the emergency room we went. Reese developed a kind of seizure called infantile spasms several days later. These are called, in the literature, a catastrophic epileptic encephalopathy. Almost a year to the date of his first seizure, Reese was diagnosed with a mitochondrial disease, Complex IV deficiency. Basically, the cells of his body don’t make enough energy for normal growth and development. The abnormal metabolism in his brain is what causes his very difficult to control seizures. He has been through numerous seizure medications, several multiple times. We have finally obtained fairly good seizure control on five different meds simultaneously. He takes a host of vitamins and supplements that are thought to help kids with mitochondrial disease. He has been out of the hospital for over a year, except for scheduled procedures and one recent ER visit. He has a feeding tube, significant developmental delays, daily seizures and when he wants to be, is the best snuggler there is. He has taught us so much in the time that he has been here. . .patience, advocacy, gratitude, and a true appreciation for time and the small things in life. As much as we wish he was a “normal” walking, talking three year old, we are thankful for our intermittent smiles, many snuggles, and many lessons he has taught us.


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