Our Story

The Charlie Foundation was established in 1994 in order to raise awareness about the ketogenic diet as a treatment for childhood epilepsy. The modern success of the diet has led to new demands on the medical community. In order to meet these demands, the Charlie Foundation has expanded its priorities to include educational programs for dietitians and …

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Charlie's Story

When I arrived at Johns Hopkins just before Thanksgiving in 1993 I was 20 months old. I weighed about 19 pounds and was taking Dilantin, Felbatol, Tegratol, and transene several times every day. I still had a bandage on the back of my head from when they operated on my brain. I had been having dozens, sometimes as many as a hundred seizures a day …

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Tim's Story - "First Do No Harm"

In April, 1971 my three year old son had a grand mal seizure. In the next four months we took him to six hospitals, 21 doctors, and he had 38 drug combinations. He was having between 150 and 200 seizures a day. He spent the last two and a half months at Pres-St. Lukes in Chicago in intensive care. I was almost praying Tim would die instead of living …

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Nevin's Story

Nevin became seizure-free six months into the diet. She has been on the diet for 16 months and successfully weaned two of her three epilepsy medications. The last medication wean will start in April 2009. Nevin is developmentally age appropriate, attends public Kindergarten, enjoys listening to music, dancing and even advocates for epilepsy in our …

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Isaiah's Story

Isaiah was born 9 days late, everyone always assumes he was premature because of all of his health problems, but he was a long way from premature. Within the first 2 weeks we knew he had a vision problem. I can't really explain it, but I just knew. I was mistakenly told that a baby needed to be 6 months old or older to test his vision. I waited …

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Scott's Story

Over the years we tried just about all of the medicines and the medication combo's but nothing worked for long. The seizures continued and became worse. He also went into nonstop seizures a lot regardless of what we tried. After having his jaw broken and several teeth broke below the gumline during a drop seizure that required emergency surgery at …

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Katie's Story

Our daughter, Katie (9 years old), loves to swim, ski, read, sing, participate in Irish dance, ballet, and team sports. She lives in Montana with her younger sister, Laura (6 years old), and her mom and dad who work full time. She travels with her family to explore national parks, camp, and visit extended family members. Katie is an incredible person …

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Leah

Leah was 5 months old when she was diagnosed with Infantile Spasms, a catastrophic epilepsy. We treated Leah with the "gold standard" in treatment of infantile spasms, ACTH. For 13 weeks, we endured all the side effects that come along with high dose steroids: weight gain, irritability, nausea, and decreased immunity, to name just a few. We saw …

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Katie M's Story

Before being treated by Mary Kay Koenig, M.D., an expert in mitochondrial diseases at Memorial Herman Hospital in Houston Texas, five-year-old Katie lived a life of daily seizures, developmental deficits and repeat visits to specialists who had no answers. Just months after beginning treatment for a glucose transporter deficiency, she could talk and …

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Raffi's Story

In December of 2004, our 4 year old son Raffi was diagnosed with a brain tumor. Despite three surgeries and several failed chemo protocols, it was clear that the tumor was winning. Raffi's vision, language and motor skills deteriorated, and a cascade of endocrine problems affected many vital functions. Our little fighter had done everything we asked …

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Nat's Story

Hello – this is the story of Nat’s journey with Epilepsy and the Ketogenic Diet. Nat was born healthy, and was on pace or ahead of the mark developmentally when he had his first seizure in April of 2007 at 2 years and 7 months old. His second seizure came less than 48 hours later, and by the time we were released from the hospital 10 days later …

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Ciara's Story

On January 13, 2005, we were blessed by the birth of our daughter Ciara (Kee-ra), a beautiful, perfect baby born without any obvious health issues. Little did we know that at 5½ months, our world would change forever, marked by Ciara’s first grand mal seizure which lasted 25 minutes. Soon, hundreds of myoclonic jerks per day, prolonged seizures …

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Diana's Story

After her seizures began, mono therapy soon became five drugs. Still, she was having seizures – and developing new types that we had never heard of. Atonic. Myoclonic. We were losing her to the drugs, their side effects and the seizures. She often could not walk, eat or play, and was very agitated. Night time brought on the worst of the seizures …

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Doug Foster's Story

My battle with epilepsy began suddenly, progressed quickly, and ended abruptly with the help of the ketogenic diet. I was a healthy child, developing normally, until the first seizure occurred when I was three years old. This was just three weeks before Christmas, 1959. During the next two months, two long hospitalizations and five drugs failed …

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Zachary's Story

Ok lets give the meds 6 more months and see. Well we didn’t wait 6 months. About 3 months later Zach was so drug up and still having seizures and had ended up in the ER one night. Well the next day when his ped came in to see him he was beside him self and had my husband send home. ( he was in the air force at the time ) and set up a Er visit with …

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Julie's Story

Julie was 10 months old when she was diagnosed with epilepsy. There's nothing more terrifying then watching your child seize, yet we were about to discover something even worse. Julie was prescribed Phenobarbital to control the seizures. I was advised the only side effect was drowsiness. I was unaware that something as simple as a tiny pill would …

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Bryce's Story

My son Bryce was a perfectly normal, healthy boy until he suffered his first seizure shortly after his fourth birthday. I still remember the day vividly. I was at work when the director of his preschool called to tell me. I ran to my car, leaving an office full of patients behind and barely stopping at traffic lights. When I arrived Bryce was post …

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Maria Fontini's Story

My story starts in Nicosia - the capitol of a small Mediterranean Greek island called Cyprus. In September, 2002 my one and only child was four months old and had her first seizure. Then after seeing Jim Abrahams movie, "First Do No Harm," we made the big step. We visited the U.S. where my daughter, Maria Fontini, began the ketogenic diet at the Mayo …

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Belle's Story

Unfortunately, most of our stories have similar beginnings but the important thing is to believe there is hope. I myself turned the diet down at first because it seemed too hard to follow. The Doctor of course supported this decision, even though he had just offered it as an option. He said the diet worked best for children who were severely retarded …

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Mathias' Story

Until Mathias was 4 years old he was like any children during play and in development. He learned to ride the bike, climb trees and loved social activities. Mathias has always been a joyful boy with humor and empathy. When he was 4 ½ years old, the kindergarten shared their concern, as they had observed him falling off the chair in a strange way. …

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Mike's Story

Michael was born on his due date, July 4, 1986. Almost immediately he began having seizures due to a grade 3 intraventricular hemorrhage (stroke), which also led to hydrocephalus (water on the brain). His seizures were controlled the first year of life with phenobarbital. The next two years were seizure-free with no treatment. Days before his third …

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Haley's Story

Haley is a beautiful little 2 1/2 year old girl with a horrible disease called Infantile Spasms. Haley started seizing at 6 weeks old and was diagnosed at 3 months with Infantile Spasms. She was started on a steroid called ACTH and then 1 month later was taken off of it due to a heart murmur. We then tried 8 other medications that one after another …

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Lindsey's Story

When my daughter was 10 ½ she had her first episode of status absence seizures, which was misdiagnosed as a condition called “confusional migraine disorder. We did not know it, but this was the beginning of our epilepsy nightmare. She also suffered from migraine headaches, but looking back, I think she was dealing with “feeling bad” from chaining …

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Sidney's Story

Our five year old daughter Sidney started having countless head drop seizures every day, when she was almost two years old. After two years of numerous trips to the doctor, trying ten different medications and surgery, the seizures continued. She had to wear a helmet, she was in a wheelchair, she could barely take two steps at the most. We desperately …

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Guinness' Story

Guinness was my baby boy that I dreamed of for over 3 years after a difficult time getting pregnant. He was a sweet baby that wasn't fussy or whiny, but rather relaxed and just a joy to be around. He was completely healthy and normal at birth and was even holding his head up a bit from the very first time we held him. About a week after he was home …

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Stephen's Story

Stephen was playing on this 'Big Boy' bed, so proud to be out of a Crib. My wife sat down next to him to listen as he chattered on about his room, his toys; anything that crossed his mind came across his lips with infectious excitement and enthusiasm. She then noticed his hand jerk and the side of his face twitch. Stephen's speech became garbled and …

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Max's Story

Today, Max is an active, friendly fun-loving four-year-old boy. He loves to be outdoors playing with trucks, climbing at the park, riding his bike, swimming and socializing with his friends. He also enjoys joking with people, telling stories and singing. These are all things that he is able to do thanks to the Ketogenic Diet. Max had his first seizure …

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Chet's Story

In 1945, at age four, I was put on the ketogenic diet for absence epilepsy by Dr. Samuel Livingston at Johns Hopkins Hospital. I remember the office on St. Paul Street and the EEG inside of a cage like room and copper wires glued all over my head. I think I fasted for about a week and was given liver and spinach for my first meal. I remember taking …

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Matthew's Story

When Matthew was 9 months old, he was having a bath when his first seizure occurred. I had never seen anything so frightening, and it was happening to my son. The first one lasted for over 15 minutes. That was Spring, 1995. By the time he was 15 months old he was having seizures daily, tonic clonics, complex partials, absences and myclonic jerks. …

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Cady's Story

Cadence (Cady) Noelle Rohrbaugh was born healthy on November 26, 2004. Her biological mother, a 22-year old college senior, chose us to provide Cady with the kind of love, stability, and life experience she could not. We brought our daughter home on Christmas Eve the same year. Cady charmed everyone with her bright eyes and sunny disposition. Developmentally …

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Angelina's Story

This is our "Angel" Angelina Schmitt. Angelina was diagnosted with infantile spasms at 4 months old. We first used ACTH and lived with the unbearable side effects of this drug. We tried every seizure medicine including medicines from outside of the USA and a partial corpus callosum brain surgery. With the help of Dr. Harry Chugani and our dietitian …

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Serena’s Story

Our story began on September 18 2008. My daughter was 5 years old, in kindergarten and a bright and healthy kid. That all changed when she had her first tonic clonic seizure on September 19, 2008. It was the first day of my new life. It all just went from bad to worse; she missed over 40 days of school and even when she was there, she wasn’t there …

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Noah’s Story

Noah had his first seizure ever, a grand mal, in May 2009, just 2 weeks after his 4th birthday. Prior to this, his development had been completely normal. He went on to have 3 more seizures in the next 3 days, with normal results on LP, CT, MRI and EEG. He was put on Trileptal and sent home, seizure-free. Two weeks later, we noticed that he would …

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Keaton's Story

Our 4 year old son Keaton has had epilepsy since he was born. He had a very traumatic birth, which also resulted in his Cerebral Palsy. Keaton tried countless medications, none of which adequately controlled his seizures. He always had Grand Mal seizures that would progress to Status Epilepticus every time. Keaton was constantly wiped out from …

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Carson's Story

Our journey with epilepsy started in January 2009. Carson was 22 month olds when we started noticing him getting really quiet and having staring spells. While staring, he would get this little grin on this face, a grin unlike his normal smile. We took him to the pediatrician and were told to keep an eye on this behavior, but that it most likely wasn …

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Macie's Story

Meet our Keto Kid - Macie. In her family’s eyes, she is a hero by any measure. She has a rare metabolic condition called GLUT1 Transporter Deficiency Syndrome. In GLUT1 ds patients, there is a problem with the way glucose reaches the brain and it is left starving for the energy it needs to grow, develop, and function properly. Ketones give …

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Noah's Story

Noah is a happy loving 6 1/2 yr old boy. He has a genetic form of epilepsy known as GEFS+ (Generalized Epilepsy Febrile Seizures Plus). His first seizure occured at 6 months. Two weeks later another seizure. He suffered weekly tonic clonic seizures on average and more often when ill. We guestimate he has survived around 300 seizures. He failed 4 anti …

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Cameron's Story

Cameron started the keto diet at the age of 8. We were out of options with medications,of which he was on 3 at once, he had the VNS implant and still having upwards of 60 seizures per day. Cameron was sleeping most of the school day either from all the medications or post seizure coma. We met with the Keto dietition, Carrie Loughran, and she counseled …

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Christina's Story

Like countless other families struggling with seizures, we were in and out of the hospital, and spent days with little sleep due to seizures that came throughout the night. After trying every anti-seizure drug, we heard about a special diet called ketogenic; not, however, from the neurologist in charge of her care, but from a sister who had seen “ …

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