Each of us has a story. A rare few have stories of hope that they lovingly share here with other parents. Hopefully their words will inspire you to keep fighting to get the best care for your child, keep finding little and big joys for your family, and keep helping us to find a cure.

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Zoey's Journey

On August 24, 2007, we welcomed a beautiful baby girl into this world, Zoey Jane Johnson, who had no obvious health concerns.

At age 3 months, Zoey received her regular vaccines like all new babies. Anxiously watching out for what we thought would be the worst of the side effects -- a fever -- Zoey slept close to her father and me that night.

That night all our lives changed. At around 1 am we woke up to a faint scream coming from Zoey's bassinet. She seemed perfectly fine, so we laid her on the bed to change her diaper before going back to sleep. Just then, Zoey's head and eyes locked to the left and she had her first grand mal seizure! We called 911 and the paramedics and police were at our house for the first of many emergency room visits. We began seeing a neurologist, who we soon found out was not the right fit for Zoey's condition and ultimately made the decision to travel out of state. We met an amazing doctor, Dr. Saleem Malik, at Cook Children's Hospital in Fort, Worth, TX.

Zoey's seizures continued to worsen. She began having thousands of myoclonic jerks a day (approximately 100 every 15 minutes), as well as grand mal seizures, sometimes multiple times a week. During some of those seizures Zoey actually stopped breathing. MRIs, EEGs, CAT scans and other tests were run in efforts to find any kind of solution. We tried numerous medications and combinations of medications, as well as the Ketogenic diet. Some of these showed promising results, but nevertheless the seizures continued. After three and a half years and dozens of tests, Zoey was diagnosed with Dravet syndrome. Zoey is now on a combination of ten medications, including anti-convulsion medications, vitamins to stop seizures and help with deficiencies she has, and medications for her respiratory condition. Two are not FDA-approved in the United States yet, therefore forcing us to import them from Canada and France Stiripentol and Clobazam -- and that only work together with the Depakote, as they call, "the magic three." Since they are not yet approved in the United States, insurance will not cover the cost and they are extremely expensive.

Zoey continues to undergo tests and hospital admissions due to the uncontrollable seizures and a respiratory condition, which causes her to have chronic pneumonia, on top of other infections. Despite all that Zoey goes through, she continues to be an amazingly happy and brave little girl who loves to sing, dance, read books, watch Elmo, and interact with EVERYONE! She pushes everyday to learn as much as she can with the help of music, speech, physical, and occupational therapies. She is the bravest, happiest, most loving person that we have ever known. We love her and just want to give her the best life she can have in spite of Dravet syndrome.

-- Mallory Jo Johnson, Zoey's mother

Cole, Epilepsy Warrior

Niki and Brian did not know where to turn when their son Cole began having seizures. Niki's own experience -- she has epilepsy and is a medical social worker at a large hospital -- did not help them understand what was happening with their son. "Things changed so often and so fast," says Niki. "This was different."

While researching Cole's symptoms Brian stumbled upon Dravet.org, where he found that the symptoms fit the description of Dravet Syndrome. Niki and Brian began to ask their doctor questions about the disease. Many months later, they received the answer that yes, Cole had an SCN1A mutation and he was diagnosed with Dravet.

"Without Dravet.org, we never would have had the right tools and information that led us to an early diagnosis for our son," says Niki. "This website was our first link to the rest of our lives. We now are in contact with others across the world who are struggling with this diagnosis. The hope and camaraderie that we give to each other gives us the extra boost needed to raise a child with a sodium channel disorder. The support offered here and access to research and other resources are invaluable to us." You can learn more about Cole's journey at Epilepsy Warriors.

Living For Grace – Melorah

Melorah is our second child. She was greatly anticipated as there is almost five years between her and Amelia, our oldest. To my delight, she arrived 2 weeks early, topping the scales at 8 lbs, 2oz. As we did with Amelia, our oldest child, we started to talk about our dreams for Melorah. What would her interests be? Where would she go to college? What would she do when she grew up?

We hit a few bumps in the road with Melorah during her first year. First, there was a dairy allergy, which required me to go dairy free and supplement with special formula. Then there was a febrile seizure at 5 months, with subsequent seizures following. Melorah had an EEG and a visit with her first neurologist. We were told not to worry, she would grow out of the seizure by 2 years old. We were relieved. Our dreams were intact.

When Melorah turned a year old, she was quite verbal. Let’s face it , she had to compete with a very talkative 5 year old sister! Soon after her birthday, we noticed she wasn’t talking as much, again we were told not to worry. By the time she was 18 months old, she was completely non-verbal. we were frantic. We didn’t know what was going on only that we were in a fight for our daughter to get her help.

Services to help children seem to be hard to find – especially if your child LOOKS okay. We had to fight to get Melorah tested for First Steps and as we expected, she qualified. At her evaluation, we learned that there were other issues that needed to be addressed as well beyond speech. We had the services for her, but not a diagnosis. It was so frustrating to see Melorah struggle with just the simple things in life. It is devastating to see her have to relearn skills that she lost due to a seizure. Watching your child seize, is the most helplessness feeling. It is not something you ever get use to – even after years of seeing a seizure, your heart stops as soon as you realize your child is seizing.

It took years to get a diagnosis for Melorah. We were introduced to another family, whose daughter had Dravet syndrome. After Melorah’s local neurologist refused to test her for the SCN1A gene mutation, we ended up in Chicago where the test was ordered. During this time, the IDEA League was formed, and we were privileged to be a part of this group. We have found the support with the IDEA League that we could not get from our friends and family due to the connection to other families who live with this syndrome 24/7.

Our expectations for Melorah have changed, but we still have dreams for her. We are thrilled when she goes a month without a seizure. We dance for joy when she goes 3 months without having dysautonomia issues. A cake is bought when she learns to ride her bike (something that she has to relearn every so often). When she sings the ABC song correctly we shout with glee. Melorah has taught us to accept people for who they are, celebrate all accomplishments (no matter how small), and enjoy every day.

Jennifer McMahan, mom to Melorah Grace
www.LivingForGrace.blogspot.com

The Banana Is Clean, It’s Got Hens, And It Is Clean

Does this title sound all Greek to you? Well, my life for the past eight and a half years has been all Greek to me…and I AM Greek!!! Mine is not a story of discovering what on earth is happening around me. This, I consider to be a wrong approach to life. Mine is a story of rediscovering what on earth is going on inside me…way deep inside.

I have divided my life in two parts: The “me-being-anybody” years and the “I-am-somebody” years. The fine invisible thread that connects these two parts is Friday, November 22nd 2002. This was the day the most beautiful person on earth I have ever laid my eyes upon (sorry wife, it’s true!)… had her first seizure. It was my daughter who had a seizure and I was totally petrified, stupefied, dumbfounded, and Dravet-stricken! I was ‘anybody’ before. I was ‘somebody’ now. I was a mere dad, and a simple twist of luck called “the first seizure” turned me forever into a “Tiger Dad!”

I didn’t quite realize it at first. I remember my mom telling stories about me having a seizure when I was a little boy. So I thought it was not a big deal. I turned out just fine, didn’t I? Oh, my! Was I ever so indescribably wrong? But now I am thinking again…was I indeed? Think about it yourselves too. Who would you be had it not been for this horrible syndrome? Would you have been a “mere parent”, or a “Tiger Parent?”

We had almost the full package that comes along with Dravet: The seizures and the drugs, (the good ones and the bad ones); The doctors who knew nothing, but believed they knew something; The doctors who knew something, but in reality knew nothing; The agony, the stress, the emptiness, the helplessness, and the hopelessness…in a nutshell, we had a Dravet child, and this child was our little Anna.

We were lucky! We had “almost” the whole package, so there were no myoclonias for us (how many of you knew this word existed before you saw one? Even my computer thesaurus cannot recognize it and it suggests mycologist instead!). There were no temperature related seizure triggers. There was borderline mental retardation. Anna was bilingual. I am septilingual (fluent in seven languages) - again not in the computer thesaurus! So the future was not bleak, at least not too bleak… and then…KA-BOOM! It all went down the gutter on January 2nd 2010 when Anna got infected by the H1N1 virus, and she lost it all. She even lost the seizures!!!

So where do I stand now? Have I picked the right numbers for the lottery, or the shortest stick out of the bunch… and I am about to jump out of the hot air balloon? What is going to happen to Anna? Will she ever regain all her functions just as Dr. “X” told me, or will she forever be crippled, unable to hold her own saliva inside her mouth and perpetually fed through a g-tube just as Dr. “Z” said? Well, I shall still love her either way!!! Oh, yes I felt lost! I did not know how to react at first. I never saw this coming, and I was always on the lookout, like a devoted soldier on duty in the trenches right before the beginning of the battle… THE BATTLE of my life!

But, thank God, I was not alone. I had my dearest Aphrodite at my side. My wife (the second most beautiful person I have ever laid my eyes upon). There…I did you justice now honey! My Aphrodite, who never lost hope when I did, and who fought like only Tiger Moms know how, and who held my hand when the doctors in the Pediatric ICU told us things like “you know Anna may not…” or “Anna may never again…”. Oh no, I was not alone in this, just as the banana has hens… and it is not alone in Anna’s self-made rhyme, which is actually the story of my life…completely incomprehensible, but strangely cute.

This is not an article about my Dravet story. This is an article about the power of a couple united against Dravet and our union lies in Anna for she is neither mine nor my wife's. Anna is ours, and she will be ours as long as God lets her. This is because Anna, with all her retardation and disabilities, used to say with her high-pitched melodic voice, “both mommy and daddy”, whenever we snuggled up together on the sofa.

I have tried hard all these years. I have fasted for weeks upon weeks for Anna’s sake, and for the sake of all the Dravet children. I have fought with doctors, teachers, civil servants and myself. I have come up with names and written poems shared by hundreds of people. I have seen my name and ideas turned into a mascot, “Telly the Tiger”. I have written lyrics and music to inspire others. I have always ended my e-mails – “Go, Go, Go Tiger Parents”, so as to send a message of motivation and courage… but all those times, I knew that Anna’s mom was there for Anna, letting me rest from my duty in the trenches by taking on my shift without complaints or second thoughts. Bottom line: Tiger Parents need to stick together!

I really do not know how all this is going to end one day when I close my eyes for good …but I guess this is the last thing I shall ever do, right? All I know is that I have Anna and Aphrodite in my arms right now…I simply choose to forget all the rest! Go, Go, Go Tiger Parents!

Pad from Greece, father to Anna

Hailey’s Story

She entered this world November 29th, the year ‘95. She has become, without doubt, a living message from God. Bringing dreams for her future, all parents can feel what I say. Etched in my memory forever the first time I saw her face. Time rumbled forward. She crawled, babbled and smiled. The dreams taking shape for my beautiful child. What will she do or be when she's grown? Will she marry, have children? Will she always come home? So bright, I was certain, more so than others. Potty trained early, talking so soon, maybe pre-school early? Who could have known? An innocent victim. A biological bullet astray. Our lives changed forever in every way. Every single thing changed except the smile on her face.

At four months old, her left hand started twitching. It marched up her arm then her face began changing. What’s happening, a stroke? What’s wrong with my baby? We rushed to the hospital fear gripping my heart. From that day to this, everything normal departed. Our lives changed forever, in every way. Every single thing changed, except the smile on her face.

The seizures crept in like a cold breeze under a door. Frantically, I searched everywhere. Were there cracks in the floors? Where were they coming from? Everything was in place. Every test was normal. They said, “Go home. Get some rest.” Were they blind? How could they not see what I saw? No sooner home, we were headed back to the ER. It’s fever, a virus one vague explanation after another. Why will no one listen to me? I’m her mother! This started our journey, not one minute without fear. Living crisis to crisis, each day felt like years.

Time rumbled forward, the seizures now master. Every moment of every day, I braced for disaster. She’s got so many types, every doctor is baffled. Is it Lennox-Gastaut, autism, an allergic reaction? Let’s test for ragged red fibers or inborn errors of metabolism. Medication trials began, too numerous to count. The Ketogenic diet, VNS, ACTH – not one single thing helped. No more dreams for her future. She's barely clinging to life. Family, work, hope - everything fell away. Every single thing was gone except the smile on her face.

Her future now measured by hours, by days. The seizures took everything, except the smile on her face. Panic and terror now normal, is she breathing my only care. The world bustled around me year after year. Doctors, hospitals, drugs - we went round after round. Back home, still no answers. Could I still feel her little heart pound? Sleeping and waking not two different states. Always alert, always waiting for the last breath she would take. Every single thing was awful except the smile on her face.

Fifteen endless years later, battle weary and scarred - waging a war against nothing, not one answer this far. Forever chasing a ghost, a shadow, always two steps behind. Searching for something anything, I don't care what I find. "Give up" they all said, too tired themselves. "Accept not knowing. You're killing yourself!" Maybe they're right. Am I crazy? Why can I not slow my pace? It's been so many years, so daunting. Then I see the smile on her face. Renewing my faith, God please help me, I'm lost! "Go back over everything child, something got missed."

More doctors, new doctors, more tests, drugs – what’s the answer? The seizures must stop. I cannot let them have her. December 20, 2010, a missed a call from her new doctor, the message light blinking. “Oh no, now what!?” I heard myself thinking. Fear again gripping my heart, I hit play. In less than one minute, everything changed in every way. It was the nurse, Susan, the test is positive... "Hailey has Dravet." An innocent victim. A biological bullet astray. Our lives changed forever, in every way. Every single thing changed except the smile on her face.

I thank God for the support and wealth of knowledge I have found through Dravet.org. Hailey and I are no longer facing this journey alone. While she continues to struggle with uncontrolled seizures and profound developmental delays, we now have a family that knows what living with Dravet is like. I have been terrified, sad and pushed to impossible feats many times, but never, since finding Dravet.org, have I been through anything alone. We are home at last - I pray our story can help bring you home as well. Thank you Dravet.org!

Ryan of Georgia

Ryan was born December 22, 1998. He was a full term baby. He weighed 8lbs 9 oz. Ryan lived his first 8 months of life as normal as any new baby. He was reaching all his milestones, sitting up, rolling, laughing, etc. He was eating well and cutting teeth.

August 4, 1999, was the day that would change our lives forever. Ryan had his first seizure. It was the longest 5 minutes of my life. The hospital ran some tests and determined that he had a virus. They told me that he had had a febrile seizure, in other words, a seizure with a fever. More than likely he would not have another seizure. Between August 1999 and January of 2000, Ryan had 5 more seizures, all due to fever.

At the end of January of 2000, Ryan had a seizure without a fever. He was then put on his first Anti-convulsant medicine, Phenobarbital. This began a long road of hospital stays, emergency room visits, a long list of failed medicines, Keto diet and VNS implant, and thousands of seizures. Many seizures lasted more than 10 minutes and sometimes even 1-2 hours. Ryan seizure triggers included, heat, illness, glare from the sun, over excitement. Ryan continued to reach all his milestones up to the age of 3 years old. Unfortunately, his seizures got worse, he regressed.

In March of 2007, Ryan is now 8, we decided to run some tests to see if Ryan would be a candidate for surgery. They did all the pre-surgical testing. I received a call from his doctor to let me know that he was not a candidate for surgery, he has Dravet syndrome. His seizures are coming from all over his brain. There is no cure. Ryan was going to need a lifetime of care. Since Ryan's diagnosis of Dravet Syndrome, he has also been diagnosed with Autism Spectrum Disorder, Obsessive Compulsive Disorder, Sensory Integrative Disorder, developmental delays in speech and with gross and fine motor skills.

Ryan still continues to have seizures almost every night while asleep, nocturnal seizures. He now functions at a 3-4 year old level. Still does not read or write. But he is a happy child that wants to explore everything. He is a typical boy in all means. Our travels have not been easy, but the road is one that we live each and every day. He teaches us that life is short, thus we should live each day to its fullest. Our dream is that one day there is a cure for Dravet syndrome and not another sweet child is lost. Thank you for your support in finding a cure for Dravet.

Delilah of California

On Valentine’s Day 2004, we were given the most beautiful gift anyone could ever behold: our first child, a healthy 7-pound baby girl, born without incidence or complications. A good baby from the beginning, Delilah impressed us all with her quick development and easy-going attitude. At five months, she was exceeding all of her milestones and drew many compliments on her seemingly older spirit.

This would all change on August 3, 2004, when at almost six months of age, Delilah endured her first tonic-clonic status seizure. She seized for over an hour. Nothing will ever erase the feeling of sheer desperation and fear we endured as we watched doctor after doctor, nurse after nurse, and specialist after specialist attempt to stop the seizure. Finally, a large dose of Ativan was injected into her shinbone; this was after having already been given 3 large doses of Valium. Once the seizure was quelled, she required intubation because she could not breathe on her own due to over-sedation. We remained in pediatric intensive care unit for five days. All subsequent tests were normal and we were sent home with the hope that this was just a one-time event. Unfortunately, that seizure would be the first hurdle in our new path.

Delilah’s condition was undiagnosed for the first three years of her life. During that time the seizures worsened and did not respond positively to any of the first line medications used for intractable epilepsy. We were challenged to find adequate help for her. She soon began developing other seizure types, having hundreds and hundreds of seizures per day. She increasingly became weaker and more developmentally delayed. She was nonverbal, communicating only with screeches and squawks. Frequent seizures were beginning to ravage her body, creating more gross motor delays and weakness. In September 2006, after being failed by six different drugs and maxing out on another, we were finally allowed to begin the Ketogenic Diet. On the recommendation of one of her neurologists, Delilah was tested for a mutation of the SCN1A gene, an indicator of sodium channel epilepsies. Three months before her third birthday, Delilah was diagnosed with Dravét Syndrome.

Currently Delilah enjoys fair seizure control, averaging about one to two tonic-clonic seizures every month, and all lasting a minute or under. Thankfully, she has not had a status seizure in almost three years. However, she is plagued daily by myoclonic jerking and absence seizures interrupting her life and learning. Despite this, Delilah’s champion spirit continues to prevail and progress.

Thanks to the Ketogenic diet, Delilah is now a very chatty five-year-old. With the exception of mild articulation delays, Delilah speaks in full sentences and is quite adept at the bargaining table. We continue to address her gross motor delays with various forms of physical therapy and approach her care from a more holistic standpoint. Delilah loves to read aloud, paint, ride her bike, play pretend, procrastinate, pillow fight and swim among many other activities. She also enjoys kindergarten, and while she finds schoolwork “boring” she loves playing with her new friends. We love her very much and are dedicated to finding a cure for her and all of our Dravét brothers and sisters. Thank you.

Luke of Australia

Luke was 6 ½ months old when he had his first seizure. It was the day after a routine vaccination. The seizure began as a twitching in his left arm and a strange smile on his face. It quickly progressed into a full body tonic-clonic seizure which lasted over 10 minutes. This frightening episode marked the beginning of extremely difficult-to-control seizures, many hospital stays and much heartache. It also marked the beginning of a completely different outlook on life and the future for us as new parents.

After an MRI and 3 EEGs, a genetic test confirmed the diagnosis of Dravet Syndrome. Luke was 1. Today he is nearly 4. He has had many different types of seizures and to date, has tried 7 different medications and combinations. Twice this year Luke has had to be intubated and placed into induced coma to help stop status seizures lasting over 4 hours. He has also endured emergency surgery to remove a vocal chord granuloma, a direct result of one of these life-saving emergency procedures.

Luke has some language delay and yet despite all the obstacles, he is a very happy little boy. He attends a special pre-school, adores Dora the Explorer, playing on the computer, watching the golf and throwing balls into holes! He is our absolute pride and joy. At the moment, we are eagerly awaiting Luke’s seizure alert dog which will undoubtedly be a major turning point in all our lives.