A message for special needs families grieving the death of a child
Remember, death doesn't mean the war was lost
Fintepla (fenfluramine) is what’s currently keeping Austen, my 8-year-old with Dravet syndrome, alive. It’s given us the most seizure freedom we’ve ever had, allowing us to move back to Texas, and I believe it quite literally saved her life when she started taking it in 2019.
But while Fintepla is her most recent lifesaver, it wasn’t her first. I’ll always credit medical cannabis for originally saving Austen’s life. In 2016, when she was 13 months old, we up and moved our family from Texas to Colorado, where we could access medical marijuana, after both Keppra (levetiracetam) and phenobarbital had failed Austen.
That move was so hard, but it gave us so much. Medical cannabis gave us roughly 18 months of better seizure control. It gave Austen’s brain a chance to rest and recover, it gave her a chance to develop her little personality, and I truly believe it acted as a neuroprotector for her brain. That helped her to not regress as much developmentally during dark times.
Moving 750 miles away from everything you know is scary. I wouldn’t have been able to do it without the help of several families who’d paved the path — families who’d do whatever was necessary to give their children a chance at life. These people helped me navigate the process. They helped me understand the logistics of our journey, and they held my hand in good times and bad, allowing me to join a community of families whose kids were like mine.
We might not have all been Dravet syndrome parents, but we were all trying to give our children a better life.
A path that death cannot erase
In the past several weeks, two of these families have lost their children. Families who helped me through the darkest times of my life are now going through a time darker than I can imagine. My heart breaks for them, and I feel guilty. Why is my child doing so well while others are suffering? Why has the universe blessed us but given others so much pain?
It makes me wonder who’s next. Will it be another family I have prayed and cried for? Or will it be us? I know all too well that Dravet syndrome plays a wicked game. Over and over again, I’ve seen kids who were doing great lose their battle to the disease. Sometimes it doesn’t matter how many — or how few — seizures they experience. It only takes one to end their lifelong battle.
The special needs parents club is a hard one to join, as no one wants in. But we’re all so grateful for the support we gain from other members.
I hope each of those families know that their child’s death does not mean their efforts to help them were in vain. I hope they can somehow see themselves through my eyes: as warriors and superheroes, just as their children were. They’re some of the strongest people I’ve ever known.
Giving up your own comforts and securities to give your child a chance is a sacrifice that no one should have to make. But they selflessly made that choice every single day of their children’s lives. It’s because of their sacrifices that their children lived as long and as well as they did.
These families trod a difficult path for those like me who follow in their footsteps, a path that death cannot erase. Even if it tried, we wouldn’t let it succeed.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
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Mary Kalavo
This is so hard to comprehend. My hear bleeds for those two families. The two kids are now on a better place