- “The life we live” follows the Spooner family on their 14 year quest to find answers. This amazing journey of hope, perseverance & scientific discovery will take you on a roller coaster ride of emotions in the search to find an answer to their daughters illness.
Cristy Spooner: Cali was born in 1998, at four months old she started to shake her head uncontrollably like she was having seizures. We brought this up to our pediatrician at the time and she didnt show too much concern. We wanted a second opinion. This new pediatrician took one look at Calis reflexes and knew something was wrong. Over the next months Calis tremors started getting worse and worse. She was violently shaking and her eyes would roll to the back of her head. It looked like she was having a full-blown seizure and we couldnt get her out of it. We went to the hospital and were admitted right away and the testing began. At this point, Cali was only 8 months old and she had to endure test after test to try and see what was going on. Every test, including the video EEG, came back showing no signs of seizures. We didnt have any explanation as to why Cali wasnt able to sit up or crawl and why she was having these seizure like movements. We saw several doctors and neurologists and all they could tell us was that her MRI showed damage to the cerebellum. They had never seen an MRI like hers before. Whatever our little girl had was very rare. In 2006, we were blessed with our 2nd beautiful daughter, Raelyn. Fortunately, she is healthy and happy. Her development has been completely normal. Then in 2009 we were blessed again with our 3rd beautiful daughter, Ryann. When she was 4 months old, we noticed Ryanns eyes twitching and her head continuously shaking. She was displaying the same seizure like movements as Cali did. When she was about 6 months old, our pediatrician recommended Ryann to see a neurologist. Its as if we hit the rewind button and experienced exactly what we went through with Cali now with Ryann. Our doctors were now out of ideas and we were struggling to accept that we may never know. Then the stars aligned and we were presented with a new cutting edge test that was available called Exome sequencing. We of course jumped at this opportunity. Finally, we had hope!