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Articles by Meagan Earley
After a tragedy, I’m trying to restore the magic of Halloween for my children
Halloween was my favorite holiday when I was a child. My grandparents threw a big party every year for their friends and family — with music, food, and games like horseshoes and pool. We would all dress up, run around like maniacs on sugar rushes, and end the night with a spooky hayride to the cemetery, where my older cousins and their friends would hide in the woods and jump out to scare us. I looked forward to that night every year. It was so magical.
Holding on to memories of Austen on our first vacation without her
My daughter Austen had always wanted to see the ocean and was jealous that her older siblings had gotten to live in Hawaii while she hadn’t. It didn’t matter that her brother, Atlas, was only 8 months old when we left the island; Austen still felt that it was unfair that he’d seen the ocean and she hadn’t. In September 2023, she got her wish. The kids and I were invited to Florida with my (now) husband, Dakota, our youngest daughter, Grace, along with Grace’s mom, her husband, and their young son.
Reminiscing on my late daughter’s educational journey
Recently, a back-to-school photo of my late daughter, Austen, appeared in my Facebook memories. It was from our homeschool years, and she chose a pajama day to kick off first grade. Clad in pink and white striped pajamas with large pink bows in her pigtails, she smiled at the camera in an “I won” sort of way. Five years later, homeschool is kicking off again in my house.
Gifting a well-loved hand-me-down to my daughter’s hands-down favorite
There’s something special about a good pair of pajamas. A nice, matching set somehow makes me feel simultaneously cozy and put together. They also mean you don’t look too crazy during middle-of-the-night trips to the emergency room (ER), and if they’re of good quality, they can last forever. When my oldest daughter, Addi, was about 2, and still my only child, I bought her Pottery Barn pajamas for Christmas. They cost about $50 and everyone said I was crazy.
Her name is Sister Bear Potato, and she is exactly what we needed
A few months after my daughter Austen passed away due to complications of Dravet syndrome, we acquired a new dog. My husband, Dakota, and I had begun talking about how both of our families have traditions of naming animals after loved ones who have passed on. His aunt and uncle have a bull and a dog named after his late cousin, and one of my dogs is named Jack, after my grandfather. We thought we’d someday get another dog and name her Sister, since we always called Austen Sister Bear.
So little time has passed since my daughter’s death; only a lifetime ago
Today marks two years since my daughter Austen passed away from complications of Dravet syndrome. Two years since I last heard her voice or held her hand. Two years since I broke up a fight between her and her siblings, or had to go into their room to tell them for the thousandth time to stop playing and go to bed. My world has completely changed in so many ways since that awful day two years ago, but in other ways, it’s the same.
Holding on to memories has helped me get through the hard days
Tomorrow would be Austen’s 11th birthday. When I found out I was pregnant with Austen, I wasn’t sure if I was going to have another home birth or not. I loved my home birth experience with Atlas in the fall of 2013, but we were stationed in Hawaii at the time. Now we were back in my hometown in Texas. I loved my obstetrician in Texas, and planned to see him throughout my pregnancy, even if I decided on a home birth in the end.
I didn’t stop being a mom when my child with Dravet syndrome died
Eleven years ago, I brought new life into the world in one of my favorite months of the year, when things begin to warm and blossom. May 19, 2015, was one of the three best days of my life — the day my daughter Austen was born. The two other best days were when her older siblings, Addisen and Atlas, were born. A tiny bundle of joy, Austen arrived 11 days earlier than expected. She brought a new light to my world that had seemed pretty dark since the death of my grandfathers only a few months before.
The stress of caring for a child with special needs affected my health
My entire world revolves around my children. As a special needs mom, I often lost my own identity in the fight to not only give my late daughter, Austen, a better life, but to keep her alive. But when Austen was about 2, I found myself at a point where I felt like a failure. I was so tired all the time, and no matter when I got to bed, I woke up the next morning still tired. The result was an irritable mama who often sat and just cried out of frustration.
I wouldn’t change a single thing about my daughter’s story
I tend to second-guess myself. I’ve done it my entire life. But it got worse when I became a mom, and worse again when I became a mom to a special needs child. When your entire world is centered around keeping a child alive, it’s hard not to fixate on what you’re doing right or wrong for that child.
Storing memories to teach future generations about our journey
I grew up in a family that didn’t get rid of our old things. Items weren’t thrown away or sold at garage sales. Things that could be used were kept in rotation, and things that weren’t were packed away and stored. As a child, I remember hours spent looking at my great-grandmother’s china set or my grandmother’s antique glass dolls. I learned to bake in old Pyrex bowls that weren’t left to sit on a shelf and look pretty; they were just never taken out of rotation.
My oldest daughter will always be a special needs sibling
If you had asked childhood Meagan what she wanted to be when she grew up, she would have said a mom. Four-year-old Meagan would have said a shortstop for the Texas Rangers, but after that, being a mom was my biggest dream. I didn’t anticipate making that goal a reality at the too-young age of 19, but I wouldn’t trade it for the world. Later this month, my oldest child will turn 18. Addisen’s childhood passed by in the blink of an eye. Did I cherish it enough?
My late daughter's dog dealt with grief alongside our family
I have always loved dogs, and for most of my life, I’ve had one by my side. There’s just something about their unconditional love that feeds my soul. My children will get mad at me if they don’t get their way, but my dogs are happy as long as I am by their side. We got Milo in January 2016. My daughter Austen was 7 months old, and we were navigating the beginning stages of what would become our Dravet syndrome journey.
A winter storm reminds me of magical snow days with Austen
I grew up in northeastern Texas, where it snows about once a year. Usually, it’s just a dusting that stays on the ground one to two days at most. Every few years, though, Mother Nature sends a real winter storm our way. We just survived the latest one, a week covered in ice topped with a bit of snow that kept us indoors for the most part, cuddled up with hot chocolate and our favorite comfort TV shows. It was “Netflix and chill” for the entire week, and I loved it.
The little lost journal that brings back memories of our Dravet journey
My late daughter, Austen, had her first seizure just over 10 years ago. Those early years with Dravet syndrome were so chaotic that I was barely able to remember what day it was, much less keep a mental log of all of her seizures, appointments, and medication changes. I knew then that I needed to find a way to keep track of the information critical to Austen’s health.
Grief comes in waves and reminds me of the start of a long journey
My mind has been filled with memories of my 9-year-old daughter, Austen, since she passed away from complications of Dravet syndrome 16 months ago. Some days, it’s all I can do to think of anything else besides the constant flood of moments with her that my mind wants to relive. But memories are a fickle thing. Some play in our minds like photos in a slideshow or videos from old family movies.
Continuing family traditions helps keep my daughter's memory alive
Even before Austen, my 9-year-old daughter who passed away from complications of Dravet syndrome, was born, I always loved traditions. Our family may not have had much money to spend frivolously, but traditions made up the rhythm of our year and gave us something to look forward to each season. If you had asked Austen, she probably would have told you that Christmas was her favorite holiday. She loved any occasion when she knew she’d be getting a present.
A return to homeschooling reminds me how high my daughter soared
The back-to-school season looked a little different for my family this year. After losing my 9-year-old daughter, Austen, last year to complications of Dravet syndrome, I decided to take this year off from teaching in the classroom and homeschool my son, Atlas, so it would be easier to travel with my husband. This year, instead of back-to-school shopping and beating the crowds at the mall, I eagerly looked for packages of curriculum and supplies.
A hospital visit brings back memories of a helping community
I recently had a visit at a Children’s hospital for the first time since losing Austen, my 9-year-old who passed away last year from complications of Dravet syndrome. While it was part of the same network as the hospital Austen visited, it was in a different city, for a different speciality, and a different child, so I didn’t expect that going there would hit me hard. I was wrong. Just seeing the signature blue roof from a distance, peeking out over the horizon, hit me like a ton of bricks.
A trip to Colorado brought back memories of my late daughter
Our family packed up and moved from Texas to Colorado just weeks after Austen, my 9-year-old daughter who passed away last year from complications of Dravet syndrome, was diagnosed with the condition. She was only 13 months at the time, and we stayed there for over five years. We moved to get her access to medical cannabis, so Colorado Springs was where Austen got her first taste of seizure freedom.
Honoring my husband's birthday as my daughter would've wished
My late daughter, Austen, loved birthdays, even when they weren’t her own. She loved any opportunity for a celebration, cake, and presents. And hers or not, she was going to help open them. Last year, the birthday of my husband, Dakota, was only two days after Austen’s memorial. We were all still in shock, but I made sure to get him a cake and have a small dinner with just us and the kids. He deserved it, and Austen, who had Dravet syndrome, would’ve insisted on it.
Reflecting on the past year without our daughter Austen
It’s been one year since we lost Austen, my 9-year-old daughter who passed away due to complications of Dravet syndrome. One year without her kisses and her sweet voice asking if I need a hug. One year without seeing her play or fight with her siblings. One year without her laughing at her stepdad’s jokes or being brought to my classroom when she’s throwing a tantrum. A lot can happen in a year. Her younger sister, Grace, is now older than Austen lived to be.
This year I'm ready to give grace to my grief
I went back to work a little over a month after losing Austen, my 9-year-old daughter who passed away from complications of Dravet syndrome. Many asked me how I could do it, but the decision to go back to the classroom was never a question in my mind. Although I knew it’d be hard to go back to the school she loved so much without her, I also knew I needed work to keep me busy and sane. Busy might not be the best word. I was assiduous.
June means memories as well as Dravet syndrome awareness
This June, for Dravet Syndrome Awareness Month, many articles are going to give you statistics, numbers, and graphs that show how horrible this disease is. I want to paint you a different picture. I want to encourage you to remember children who’ve fallen victim to Dravet syndrome in the ultimate way — and that includes Austen, my 9-year-old who passed away with it 11 months ago. Austen was No. 3 in a lineup of four siblings. Her birth was a wild ride that took less than three hours.
This year, I celebrated my daughter's birthday without her
I made a deal with my late daughter, Austen, when she was just 1 year old. The deal was that she’d make it to 10. That was because she had Dravet syndrome, and statistics showed that most deaths attributed to the syndrome occur before a child is 10 years old. I figured that if I could get her to that age, then I could get her to adulthood. But I couldn’t. Nine years, one month, and 10 days: That’s how long Austen graced this planet before God called her back to heaven.
Laying my daughter to rest among generations of family
I’ve known since I was a small child that whenever I pass, I want to go to a specific cemetery. It sounds odd, I know, but five generations of family ahead of me have gone into that same plot of land. Imagining joining them as part of the sixth generation has always been a bit comforting, a family reunion of sorts. What I didn’t anticipate was that my own child, the seventh generation, would go into that cemetery before me.
How I'm anticipating grief and preparing myself for heartache
When my daughter Austen passed away last summer, I honestly believed I wouldn’t be able to survive the pain. She was 9 years old, and I’d spent eight and a half of those years focused on keeping her healthy and alive through her Dravet syndrome. The pain was all-consuming; I couldn’t seem to breathe without her. Eventually, slowly, days got a bit easier.
Our new school yearbook stirred up unexpected grief
Yearbooks are like mirrors that give us a glimpse into the past. As a teacher, I love looking at them. During the school year, I’m so focused on the daily ins and outs of teaching my students that I often feel like I’m on autopilot. Sitting down with that year’s yearbook gives me time to relive many moments from school and soak in the memories. Plus, it’s always been fun to see what my children have been up to while I’ve been focused on my class.
I'm coming to terms with another heartache
My family moved to Colorado when Austen, my daughter who last summer passed away at age 9 from complications of Dravet syndrome, was just a year old. We moved to get her access to medical cannabis there, and while I don’t regret that choice, it was hard to take my children away from their family and friends in our small Texas community. Because of that, we made the 12-hour trek back to Texas often, and almost every time, I’d stay with my aunt and uncle, my mom’s older sister and her husband.
Looking back, I chose the perfect name for my late daughter
Austen, my 9-year-old who passed away from Dravet syndrome last summer, was the only one of my children I named. Addisen, her 17-year-old sister, and Atlas, her 11-year-old brother, were named by their grandmother and father, respectively. So when I unexpectedly found myself pregnant with our third child, one of the first things I said was, “I’ll be naming this one.” Her first name wasn’t hard.
The emotional return of a beloved dress
None of my children are exactly alike, and I like it that way. Each has an individual, vibrant personality; while one might like theater, another favors video games. Siblings, whether they share the same DNA or not, are not carbon copies of one another.
I struggled to celebrate my birthday without my late daughter
The first year after losing a loved one is filled with many firsts. I anticipated many of these moments being hard after Austen, my 9-year-old daughter, passed away last summer due to complications of Dravet syndrome. I was prepared for Halloween, Christmas, and her birthday to rip the wound of losing her back open. They were all holidays she loved, and spending them without her would be bittersweet. The pain of other holidays, however, I wasn’t prepared for.
Seeing my children's grief can be worse than my own pain
Grief is weird. One day you seem perfectly fine, but the next day the pain is so intense that you don’t think you can physically breathe without your loved one. As a parent, I can’t imagine going through any worse kind of pain than what I’ve felt since losing Austen, my 9-year-old with Dravet syndrome. But I’m not the only one in pain, and I’m not the only one who lost her.
I'm trying to keep my daughter's memory alive in our new home
Within days of my daughter Austen’s accident last summer, I began to think I’d never be able to live in our old house again. A week or so after she died, I went back, just to make sure. Even though I felt at peace on the property, my feelings were confirmed. It wasn’t that I didn’t have happy memories there; they were all around me.
Stoke, Biogen team to advance zorevunersen as Dravet treatment
Stoke Therapeutics and Biogen are teaming up for the further development and potential commercialization of zorevunersen, an experimental treatment for Dravet syndrome that’s moving into late-stage clinical testing.
I find myself holding on to my late daughter through her things
My daughter Austen, who passed away last summer at age 9 from complications of Dravet syndrome, wasn’t attached to many things. It may have been related to her autism, but she just wasn’t that interested in many physical objects. But the few items she did care for, she held on to with a fierce grip. Her pink dinosaur costume is a great example.
Learning anew to find joy in the midst of sorrow
Losing my daughter Austen, who had Dravet syndrome, was the hardest thing I’ve ever gone through in my life. There’s no way around that. It doesn’t matter if you know your child is sick, if you know there’s a chance that they’ll die, or if you’ve experienced death on a smaller scale throughout your life. Nothing could prepare you for the loss of your child. I’m not the first one in my family to have lost a child. I have two aunts and a cousin who’ve all had to bury one of their children.
Starting a new school year wasn't the same without my daughter
Back-to-school season is usually filled with wonder and excitement. New clothes, new books, and even the smell of new pencils make me blissfully happy. As a teacher, going back to school with my kids every year adds another layer of anticipation. At least, it did until this school year, which I had to start without my youngest daughter, Austen. She passed away last summer at age 9 due to complications of Dravet syndrome.
I never imagined our Dravet journey would end like this
In February 2016, I learned about Dravet syndrome from a Google search. My youngest daughter, Austen, then only 8 months old, had been having seizures for the past three months and we couldn’t figure out why. We’d been informed that two-thirds of people with epilepsy never know what caused their condition, but I was convinced we wouldn’t be among those numbers.
FDA grants relutrigine rare pediatric disease designation for Dravet
The U.S. Food and Drug Administration (FDA) has granted rare pediatric disease designation to relutrigine, a treatment candidate for Dravet syndrome that’s being developed by Praxis Precision Medicines. The therapy aims to reduce seizures in children with epileptic disorders such as Dravet. “We are thrilled to have been granted rare pediatric disease designation for relutrigine in Dravet syndrome,” Marcio Souza, president and CEO of Praxis, said in a company press release.
SUDEP risk in Dravet may be sex specific, with heart issues in males
In a mouse model study of Dravet syndrome, males were seen to be more vulnerable to abnormal heartbeats and heart deficits in energy-producing mitochondria than female mice. These findings suggest that male Dravet patients may be particularly vulnerable to sudden unexpected death in epilepsy (SUDEP), a fatal seizure complication that is thought to be associated with several factors, including abnormal heartbeats, or arrhythmias.
Keto diet reduces seizures in genetic epilepsies, including Dravet
Children with genetic causes of epilepsy, including Dravet syndrome, were more than five times more likely to have fewer seizures after following a ketogenic diet, known as keto, for one year, according to a new study. Across all types of hard-to-treat epilepsy, nearly three-quarters of patients responded to the low-carbohydrate and high-fat diet. Responders were generally younger than nonresponders, but were older at the time of seizure onset. They also had less frequent seizures before the diet.
Lundbeck to buy maker of Dravet syndrome treatment bexicaserin
Lundbeck agreed to acquire the company developing bexicaserin, an investigational treatment for seizures associated with Dravet syndrome and other developmental and epileptic encephalopathies (DEEs). Lundbeck will buy Longboard Pharmaceuticals for $60 a share in cash, or a total of about $2.6 billion, the companies announced.
Dravet syndrome treatment Diacomit may ease status epilepticus Original
Add-on treatment with Diacomit (stiripentol) was associated with reductions in the number of episodes of status epilepticus (SE), periods of prolonged seizure activity, in people with Dravet syndrome and other types of epilepsy, a review study found. Evidence also suggested that Diacomit may be able to stop ongoing SE episodes that aren’t responding to standard treatments, although more research is needed to establish its use for that purpose, the researchers said.
Dravet syndrome treatment Zorevunersen sustains benefits
Stoke Therapeutics’ zorevunersen, a treatment that addresses the genetic cause of Dravet syndrome, continues to reduce the frequency of seizures in children and adolescents who are taking part in Phase 1/2 clinical studies in the U.S. and the U.K., while also leading to improvements in cognition and behavior.
Foundations partner to provide Dravet bereavement support
The Dravet Syndrome Foundation (DSF) is partnering with the Mason’s Movement Foundation to provide bereavement support to families who have lost someone to Dravet syndrome. The partnership connects bereaved families to a Mason’s Movement initiative called the Good Mourning Project, which provides resources, support, and remembrance items to parents and siblings. The goal is to ensure grieving Dravet families in the U.S. have access to resources that may help them through a difficult time.
Heart protein NaV1.6 may be target to prevent Dravet syndrome sudden death
Targeting a heart protein called NaV1.6 may help prevent sudden death in adults with Dravet syndrome, a study in mice suggests. The study, “Cardiac-Specific Deletion of Scn8a Mitigates Dravet Syndrome-Associated Sudden Death in Adults,” was published in JACC: Clinical Electrophysiology.
Dravet syndrome parent support lacking, Spanish study finds
Parents of children with Dravet syndrome in Spain say they don’t get enough support to help meet the emotional and economic challenges of the disease, a study found. “The findings of this study underscore the need for policy reforms that specifically address the challenges faced not only by individuals with [Dravet syndrome], but also by their families,” researchers wrote in the paper, “The social and emotional burden of Dravet syndrome on Spanish caregivers,” which was published in Heliyon.
Dravet families need support networks, study finds
Having a child with Dravet syndrome affects the whole family, and it’s common for parents to feel burnt out and sleep-deprived and for siblings to feel unseen, a study reported. Clinicians should be proactive about offering information about support networks for families affected by Dravet syndrome, the study’s authors said.
Diacomit may be best Dravet syndrome treatment: Analysis
Diacomit (stiripentol) may be more effective than other available Dravet syndrome treatments at reducing the frequency of seizures, according to an analysis of data from multiple clinical trials. The therapy “can be recommended as the first choice among the included drug regimens for reducing seizures in [Dravet] patients,” researchers said.
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