In June 2008, both my daughters, then ages 1 and 5, were diagnosed within two weeks of each other with an unknown immune/pulmonary issue and benign rolandic epilepsy BRE). Both children continued to have hospitalizations, testing and numerous doctor appointments. To date, both girls take two daily medications to help with their conditions. My youngest nearly died and was intubated for 10 days in November of 08. She's more stable now thankfully!
Jamie never had any seizure issues prior to the one morning in June of 2008. Out of the blue, she was lying still and almost asleep when what appeared to be a right side stroke was hitting her. After a hospitalization, she was diagnosed with BRE which is a type of epilepsy that doctors do not know what caused seizures and most outgrow it after puberty. We had to keep trying different doses and different medications until we finally found Keppra worked to stop the seizures. Keppra, twice a day, is our savior and luckily, to date, she has not required her rescue medication as she's not suffered a grand mal. She still has developmental delays and had to repeat kindergarten. The medication or condition has definitely impacted her ability to speak and focus but she prevails through her art, her writing and desire to help others.
Jamie was recently diagnosed with Pediatric Migraines and Pediatric Insomnia which added to her daily regiment of medidations.
During Jamie's sleep study to determine a follow up of her seizures, a couple of groups of people provided support to the children at the local children's hospital's epilepsy ward. Their act of kindness provided us with a more enjoyable couple of days of playing games, playing puppets and talking about the fun things we were able to do. She's a very creative person and it was just after this stay, she wrote her first book, The Gorilla on the Swing, which was self-published.
Jamie wanted to take her work one step further and starting this Easter, she will be delivering tote bags full of toys, snacks and other goodies that kind people have donated via her website, angels4epilepsy. Her wish is to do this twice a year, if not more, to help other children with chronic conditions who are in the hospital.
If you would like to contribute to Jamie's mission, please send an e-mail to angels4epilepsy@yahoo.com.
1 comment:
Wow, what an inspiring story. Having a child with special needs can be difficult, but also has rewards other people don't ever know.
I hope things continue to be ok.
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