Thank You, Colorado

In June 2016, I packed up my home in Texas, my three children, and my entire life, and moved 752 miles away to Colorado in search of hope. Hope that we could delay putting my youngest daughter, Austen, on another serious anti-epileptic drug to treat her worsening seizures, caused by a mutation in a gene I’d never even heard of. Austen, now 6, has the SCN1A mutation, the main cause of Dravet syndrome.

Part of it felt like the end of a journey, as we had spent the past seven months on a roller coaster of seizures, doctors, hospitalizations, and tests. We finally had an answer, a name to the enemy hurting our baby. The move was dramatic, we knew, but side effects such as slow thinking, impaired motor skills, and coordination issues also seemed dramatic. We wanted to hold off on using anti-epilepsy medications for as long as we could, so we put our faith in a plant.

I’m not here to whine about how cannabis did not end up being our golden ticket — it helped Austen for a wonderful 18 months. I’m also not here to say I’m against pharmaceuticals. When cannabis stopped helping with Austen’s seizures, we tried Onfi (clobazam) and Depakote (sodium valproate) before finally starting Fintepla (fenfluramine) in July 2019. So far, it seems that we have found our golden ticket. It was slow going at first, but the medication is currently providing the best seizure control Austen has ever had.

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Twenty-nine months after that first Fintepla dose, I am packing up the house again. The boxes are stacked up where my kitchen table once stood. (The table sold recently because some moving companies charge per piece of furniture, and divorces have a way of draining a bank account.) All of our Christmas presents are wrapped, and we have asked Santa to come five days early since we will be making the 752-mile drive back to Texas on Christmas Eve.

I’m crying as I look around my house, which gets emptier by the day. This house, this state, have given us so much over the last nearly six years. We moved here with so much hope, and are leaving here with so much more.

I truly believe Austen wouldn’t be where she is today, both cognitively and physically, if we had not moved to Colorado. There is a decent chance she wouldn’t even be alive, based on how her disease was progressing before the move.

But she is alive, and she is thriving. I have the great state of Colorado to thank for that — including a plant named cannabis, a neurologist who was willing to try whatever it took to help her, and a pediatrician who gave me her nurse’s direct number in case of emergencies.

Countless nurses, therapists, church friends, and members of the community have helped Austen to get to where she is today. I will never be able to thank them for all they have done for her, for us. And I will never forget them, either.

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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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