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400 Seizures a Day: One Family’s Story of Resilience and Hope

With my youngest daughter it was an easy pregnancy. Although the plan was to name her Ruth, as soon as I saw her, I knew her name should be Grace. Grace is a gift. At eight years old, her infectious exuberance for life flashes in her big brown eyes and cheeky smile. She’s also a warrior. You would never know that, as an infant, Grace was having hundreds of seizures per day. 

When she had her first seizure at four months old, I was terrified. I had no idea it was a seizure at the time. In the beginning, Grace’s seizures looked like “head drops,” meaning her head would fall forward harshly several times a day. About 40 to 50 times a day she would look up to the right, her eyes fixated. Then there were the “body jerks,” which happened about 10 to 15 times a day. Her arms, legs and even her fingers would jerk around, sometimes while I was breastfeeding her. By the time Grace was six months old, she was having hundreds of seizures a day. At 10 months old, that number had risen to 400.

I had to throw everything I knew about parenting out the window. Everything became about controlling Grace’s seizures. We bought her a fitted helmet to stop her from hitting her head on the furniture. We cleared the whole living room and put pillows all over the floor. At the time we didn’t know she couldn’t regulate her own body temperature. This meant taking a warm bath or playing outside could trigger a seizure. Even excitement could trigger a seizure, like when giving her a new toy or when my husband got home from work. It felt like we were flailing and just trying to figure out how to survive day to day. But I knew I wanted a better life for us. I knew I wanted a better life for her. 

While conducting my own research, I found a story about how cannabidiol (CBD) — a compound found in the cannabis plant — helped a little girl whose story was similar to Grace’s. I wanted that for Grace as well, but it was important to me to find a CBD oil I could be sure didn’t contain THC, which causes the “high” associated with marijuana. Unfortunately, when I tried bringing this up to different neurologists, none of them would talk to me about it. It took going to a neurologist an hour and a half away to finally find someone who listened to our pleas. She understood I didn’t want to be a bystander in Grace’s care — I wanted to help my child in whatever way I could. 

Finally, after the fourth appeal to my insurance, they agreed to cover the epilepsy gene panel. After reviewing the results, our neurologist told us Grace had Dravet syndrome, a rare, drug-resistant form of epilepsy. We found out that about one in 16,000 infants born in the U.S. have Dravet syndrome, and that it’s a life-long condition. Although we had been waiting for answers in the form of a diagnosis, when I heard the news, I broke down and cried. I had read about the severity of the condition and understood that Grace’s seizures could dramatically impact her development, leading to life-long struggles with her speech and mobility as well as battles with  infections. However, our neurologist helped me move past mourning the life Grace could have lived when she told me that if I could meet Grace where she was, she could thrive. 

My insurance company needed a genetic test for a proper diagnosis, but my insurance company didn’t want to pay for the sequencing of a full epilepsy panel. The decision was appealed for months, and during this time we tried most medications that were allowed for children under two years old. However, her seizures didn’t change with these treatments, but Grace did. She was sleepy most of the time. We only had small windows where we could see glimpses of her true personality. This wasn’t what we wanted — we wanted Grace to have less seizures, of course, but we also wanted her to be happy and enjoy her life and for her true personality to shine through.  

Armed with an official diagnosis and a neurologist who was willing to collaborate with us, we learned about a treatment option called EPIDIOLEX® (cannabidiol), a highly purified form of CBD that is plant-based and not synthetic. Because EPIDIOLEX follows the strict regulations of the FDA, we can trust that it doesn’t contain any contaminants like toxic heavy metals or pesticides. EPIDIOLEX is approved by the FDA for the treatment of seizures associated with Dravet syndrome, as well as two other conditions, Lennox-Gastaut syndrome and tuberous sclerosis complex, in patients one year of age and older.


Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX. EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment.

Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information. 

Please see additional Important Safety Information & Indications below.

We had been warned about the possible side effects involved, including diarrhea, sleepiness, and potential impact to liver function, but believed EPIDIOLEX was worth trying. Once Grace started taking EPIDIOLEX, we slowly began to notice she was having fewer seizures. Soon, she was able to tolerate more time outside, and could even feel excited without triggering a seizure. One of the best moments for us was the day my husband came home from work, and Grace greeted him at the door without having a seizure. Grace is not completely seizure-free but is able to live a much fuller life. Now, there’s more laughter, more possibilities, and much more fun in our lives. 

 Looking back, I can see how much the constant stress affected our whole family dynamic. My husband and I went from being a married couple to just two people taking care of Grace. My daughter Madlyn was nine years old when Grace was born, so Grace’s health challenges impacted her childhood too. But that never stopped us from working together as a family. Back when things were rough, my husband would ask why I would take photos of Grace while she was on a ventilator or recovering from a seizure. My answer was always, “One day, I’m going to show her how strong she was.” 

Because Grace can never be unattended, my husband and I take turns practicing self-care. For me, it’s gardening. For him, it’s fishing. This journey has humbled me and taught me more than I can ever say. While I always thought asking for help was a “weakness,” being a mom of a child living with a rare form of epilepsy made me realize I have to be open to people who are willing to help. I’m lucky that my husband’s large, extended family has been such a source of support.

As parents, we can’t give up hope. We know our child and ourselves more than anybody does. We have to ask the hard questions, follow our instincts, search for answers, and cover all the bases. No question is too silly or insignificant. I hope that by sharing what I have learned, I might be able to help someone else’s child — and that’s an honor.

Click below to learn more about Grace and her family’s journey and watch the stories of other families.

Important Safety Information & Indications (continued)

What is the Most Important Information I Should Know About EPIDIOLEX (cannabidiol)?

EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment. In some cases, EPIDIOLEX treatment may need to be stopped. Call your doctor right away if you start to have any of these signs and symptoms of liver problems during treatment with EPIDIOLEX:

  • loss of appetite, nausea, vomiting
  • fever, feeling unwell, unusual tiredness
  • yellowing of the skin or the whites of the eyes (jaundice)
  • itching
  • unusual darkening of the urine
  • right upper stomach area pain or discomfort

EPIDIOLEX may cause you to feel sleepy, which may get better over time. Other medicines (e.g., clobazam) or alcohol may increase sleepiness. Do not drive, operate heavy machinery, or do other dangerous activities until you know how EPIDIOLEX affects you.

Like other antiepileptic drugs, EPIDIOLEX may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call a healthcare provider right away if you have any signs of depression or anxiety, thoughts about suicide or self-harm, feelings of agitation or restlessness, aggression, irritability, or other unusual changes in behavior or mood, especially if they are new, worse, or worry you.

Take EPIDIOLEX exactly as your healthcare provider tells you. Do not stop taking EPIDIOLEX without first talking to your healthcare provider. Stopping a seizure medicine suddenly can cause serious problems.

What Else Should I Know When Taking EPIDIOLEX?

The most common side effects of EPIDIOLEX include increase in liver enzymes, sleepiness, decreased appetite, diarrhea, fever, vomiting, feeling very tired and weak, rash, sleep problems, and infections.

EPIDIOLEX may affect the way other medicines work, and other medicines may affect how EPIDIOLEX works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements, and cannabis-based products.

What Additional Information Applies to Women?

If you are pregnant or plan to become pregnant, EPIDIOLEX may harm your unborn baby. You and your healthcare provider will have to decide if you should take EPIDIOLEX while you are pregnant.

If you become pregnant while taking EPIDIOLEX, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry (by calling 1-888-233-2334). The purpose of this registry is to collect information about the safety of antiepileptic medicines during pregnancy.

Because many medicines like EPIDIOLEX are passed into breast milk, talk to your healthcare provider about the best way to feed your baby while taking EPIDIOLEX.

What is EPIDIOLEX (cannabidiol)?

EPIDIOLEX is a prescription medicine that is used to treat seizures associated with Lennox-Gastaut syndrome, Dravet syndrome, or tuberous sclerosis complex in patients 1 year of age and older.

It is not known if EPIDIOLEX is safe and effective in children under 1 year of age.

Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information.

You are encouraged to report side effects of prescription drugs to the FDA. Visit, or call 1-800-FDA-1088. You may also contact Jazz Pharmaceuticals at 1-833-424-6724.


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