Thursday, March 1, 2007
Reagan Leigh was born on March 21, 2007. She was full term and the picture of health. The first few months of her life were relatively normal. We were adjusting to the lack of sleep and slowly learning how to console a colicky baby. When Reagan was four months old we took her to see an ophthalmologist because she wasn’t making eye contact and her eyes would turn in. The doctor told us this was normal and she would probably grow out of it…her eyes were “healthy”. At this point we had noticed some delays in her development, but being first time parents, the signs weren’t that obvious to us. We just assumed that the delays were related to her eyes turning in. However, she was later diagnosed with a neurological condition called Cortical Visual Impairment. She has very limited vision and has already had cataract surgery on both eyes. When Reagan was five months old I witnessed an occurrence of twitches that concerned me and we took her in to a new pediatrician for evaluation. Immediately the doctor ordered testing and suspected seizures. Following testing, Reagan was diagnosed with a catastrophic seizure disorder called Infantile Spasms. It’s amazing how your whole life can change in the blink of an eye. These seemingly insignificant “twitches” were in fact very harmful to her development and continuously increasing. Reagan had hundreds of these seizures a day which caused her development to remain at a virtual standstill since her diagnosis. At one point, she was having, in excess of 1000 seizures a day. She has been on a myriad of drugs, both oral and injections. Our lives quickly became filled with doctor’s appointments, therapy sessions of all kinds, and endless barrages of testing. She is now on her fourteenth medication (Banzel) and it's the only one that has ever significantly decreased her seizures. After tons of genetic and metabolic testing that all came back normal, we finally decided to have a muscle biopsy to check for mitochondrial disorder and it came back positive for a defect in the Mitochondrial Complex I & IV. Our faith, family, and friends (many of which we've met online with similar stories to ours) have helped us through this trying time. We still hold out hope that Reagan's development will take off and we'll see great progress. We believe that through God all things are possible!