Around 1 in 5 children with my 6-year-old’s rare form of epilepsy die in childhood. I am regularly reminded of this reality when other caretakers in a Dravet Syndrome Foundation online support group post that they lost their precious child. Just last week, a parent posted about her young daughter dying from a seizure. I can’t help but fear that a future post may be by me, especially given the cuts made under the restructuring of the U.S. Department of Health and Human Services last week to agencies working toward a cure.
Seizures are often so severe for people living with Dravet syndrome that they cannot be left alone. Since our child was diagnosed two years ago, my spouse and I take turns having eyes on him, and we have learned to be ready at a moment’s notice to administer rescue medication. The only time he is away from us is when he attends school. Because of his condition, we both primarily work from home, and we take turns being on call to rush to school to help with a seizure, just as I did two weeks ago.
Every day, I am on edge, watching my child for signs of a seizure. He loves to be with other children, play and explore, and I do everything I can to allow him to do those things, safely. But this is high-stakes parenting with no guidebook, and I make mistakes sometimes, like letting him kick the soccer ball a few minutes too long with a friend or not stopping him soon enough when he runs around the house chasing his toddler sister, and he overheats and has a seizure. I worry that one day, a future mistake could cost him his life.
There is currently no ‘cure’ for this type of epilepsy, but there are a few promising medications in various stages of trials that could significantly reduce the frequency and severity of seizures and increase the chance that our children make it to adulthood. Caretakers in our support group regularly mention these as beacons of hope, as potential lifelines. We focus on trying to keep our kids stable until these medications are approved and available thanks to the work of dedicated researchers, funders, scientists, advocates, Dravet Syndrome Foundation staff and many others.
But how will the research and medication-approval processes be able to continue as planned given the many cuts and layoffs at entities like the National Institute of Health, the Food and Drug Administration and the Centers for Disease Control and Prevention?
These cuts have seen significant impact to agencies working on epilepsy research and programming, like the Center for Drug Evaluation and Research and the National Institute of Neurological Disorders and Stroke.
The Epilepsy Foundation posted on Facebook last week that the CDC Epilepsy Program experienced significant staff reductions that will “halt progress in preventing, treating and managing epilepsy.”
This will negatively affect so many lives.
Of course, Dravet syndrome and epilepsy overall aren’t the only conditions being negatively affected. There are 10,000 rare diseases and only 5% have a U.S. Food & Drug Administration approved treatment option. Thus, funding and support from entities like NIH and FDA are critical for the fruition of future treatment options.
The National Organization for Rare Disorders (NORD) issued a statement urging the Trump Administration to “consider the unique challenges facing the rare disease community” and not strip these agencies of their workforce.
That is my plea, too, for my child and for others like him.
It is not too late for the Trump Administration, for Congress, and for the public, to recognize the value of the lives being affected, step in and turn things around. Already people cut from other agencies are being reinstated, including at the U.S. Department of Housing and Urban Development, National Parks Department, Defense Department and the Department of Veterans Affairs. Now is the time to undo the staff and funding cuts to these health-focused agencies before any more days pass and critical research time is lost. Let the researchers, scientists, and other experts continue their lifesaving work.
