39 days of recess. For members of Congress, this will be time away from their posts in Washington, an opportunity to reconnect with their districts or states, and a period that indubitably will be lamented in hindsight as having passed all too quickly. But for our families, and the children who suffer from intractable epilepsy, each of the 39 days will seem like an eternity.
For many of our families, 39 days will mean watching children suffer thousands of seizures, each sending these children into unbearable physical trauma, and taking their families’ households to the top and bottom of a life-or-death roller coaster ride that they so desperately want to stop. To our families, 39 days may mean 39 sleepless nights and perhaps even funerals. And for those unable to transplant their families to seek the only therapy known that could quiet the seizures, it will be 39 more days bound within their state borders without access to hope.
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