Ashlyn has been such a blessing in my life and I wanted to share her story of strength and determination with all of you.
Ashlyn had no complications at birth and was healthy and developmentally on target. At 13-months-old, she developed a red rash all over her body and a high fever. Her father and I took her to the ER and were told that she had a viral infection which was not uncommon and that the rash would run its course and she would be fine. We took her home that night, put her to bed and the next morning we found her unresponsive and in a grand
mal seizure which lasted 20-30 minutes. She was taken by
ambulance to the hospital and was in and out of the pediatric ICU for two weeks. Multiple tests were run and she was assessed by an infectious disease doctor but no one was able to diagnose the virus that attacked her body. It was later discovered that this unknown virus attacked the left side of her brain and caused significant damage. There was also discussion of her possibly having a stroke. When we left the hospital with
Ashlyn she was unable to move the right side of her body and had some sensory and feeding issues. After months of physical, occupational and speech therapy she was able to walk by age 2 and gain some function in her right arm. Her therapies over the last three years have included
botox injections in her right arm and leg (to alleviate some of the
spasticity), horse riding (
hippotherapy), braces (
AFO) on her right foot and arm, stem therapy, casting her left arm to force her to use her right arm, etc.
Aside from the physical problems,
Ashlyn developed epilepsy approximately one year after the encephalitis. Over the last couple of years her seizures have become more frequent and intense. We tried multiple combinations of seizure medications which have been unable to control her seizures. Over the last few months she has been having multiple seizures a day which affects her behavior and ability to progress and learn. The seizure medications have also reeked havoc on her little body. She has been hospitalized two times for
pancreatitis in the last year and a half and has been hospitalized multiple times for toxicity from one of her seizure medications.
Because of the intensity of her epilepsy and the complications with her medication, the decision was made to pursue surgery to ultimately stop her seizures for good and provide her with a better quality of life. According to her doctor, without surgery her seizures would become even more frequent and intense and she would have a very limited life. On 7/6/09,
Ashlyn had surgery where grids were placed directly on the left side of her brain to help determine the location of her seizures and the functionality she still has on that side of the brain. The grids were left on her brain and she was observed in the hospital for a week. The testing was successful but very taxing on her body. On 7/13/09, she had surgery again where they completely disconnected the left hemisphere of her brain from the right hemisphere (AKA
hemispherotomy). This means she only uses the right side of her brain. Because the left side of her brain has been disconnected, once again the right side of her body has taken a hit. There will be months of therapy and recovery to get her walking again and back to her physical state prior to surgery. We are still in the hospital and are soon being transferred to an in-patient rehabilitation facility.
Ashlyn is a fighter; please keep her in your thoughts and prayers.
