Claire
My blogs
| Introduction | Melanie was born in 2008, healthy and gregarious. She had her first seizure at four months and has had countless more since then, of all different types. She has delayed development, and her movements are ataxic (uncoordinated) and her feet are pronating (collapsing). She has side effects from her seizure meds, including issues with ataxia, mood, focus, speech, sleep, appetite, etc. Late 2011 Melanie was diagnosed with Dravet Syndrome (DS). The cause of her disorder is a mutation in her SCN1-A gene. DS is characterized by early-onset of seizures, prolonged and intractable (extremely hard to control) seizures of multiple types, developmental delays and regressions, and a host of other common characteristics. Melanie appears to be in the moderate part of the Dravet spectrum. She’s had no big regressions and we have decent seizure control. Things can change in a heartbeat, but living with this syndrome has taught us how to live day-by-day and cherish the good times. At no other time in my life have I clung more closely to this promise: "'For I know the plans I have for you,' declares the Lord. 'Plans to prosper and not to harm you; to give you a future and a hope.'" Jer 29:11 |
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