Margaret's Story

Images Captured by Photo Tales by Carmalee

Tiny Light Margaret is a beautiful, happy three-year-old. At six months old, she was diagnosed with a catastrophic form of epilepsy called Infantile Spasms, otherwise known as West Syndrome. She went from a normally developing baby to a baby who had hundreds of brain damaging seizures a day. After medications, the seizures stopped for a short time, but in June 2012, they came back. The more seizures Margaret had, the more she regressed.

In January 2011, doctors further diagnosed Margaret with Epileptic Encephalopathy with intractable seizures as well as severe functional communication disorder with autistic traits. Because Tiny Light Margaret has had several seizures a day, she was at risk for developing convulsive clonic tonic seizures. As of October 2013, Christine, Margaret’s mother, reports that Margaret has in fact developed convulsive clonic tonic seizures that have resulted in hospilization. These seizures have caused more regression for this Tiny Light.

Margaret is responding well to her new medication, and her family hopes for a seizure-free life. The future may hold brain surgery for Tiny Light Margaret, where doctors would remove the part of her brain that starts the seizures. She may also lose her mobility. She may also respond well to her medication, stopping all seizures and, therefore, finally allowing her brain to continue to develop.

Although the family has suffered financially due to all the time lost from work to attend appointments and hospilizations, mom Christine is thankful for the things that Margaret has taught them to appreciate: like eating with a spoon, walking and laughing. Christine says, Margaret’s diagnoses and battles have been life changing for the family, but ‘we live each day as it comes.’ They hope that her future holds a life free from seizures and that Margaret maintains her happiness with the world around her.

Tiny Light Margaret has the ability to laugh, sing, dance, jump and smile through everything. Her family continues to take each day at a time and celebrate her!

Story Written by Valerie Bush