About Hannah

On May 24, 2003 we welcomed our third child, Hannah Rae Ellefson into the world. After a wonderful and uneventful pregnancy, Hannah was born by c-section at the Rockyview Hospital in Calgary, Alberta. She was absolutely perfect. She grew and developed normally, even somewhat advanced for her age. She sat on her own at 4 months of age, walked unassisted at 10 months, and was speaking in sentences at 12 months. Hannah was very active and determined to keep up to her two older brothers, Kalen age 7 and Connor age 5. She was our “energizer bunny”, full of life, all sorts of mischief, and “little miss sociable”. She started ballet at the Alberta Dance Academy in September 2006 and shortly after began preschool at Open Arms Preschool. We watched in amazement as she learned the alphabet, counted to 20, learned to ride her bike, and recited her phone number and address at three years of age.

Then on October 11, 2006 at the age of 3 ½, Hannah's world was suddenly turned upside down. While playing on the floor at her Grandpa's house in High River, Alberta, she suddenly went limp, tipped over, her eyes shifted up and rolled, and she turned blue. Grandpa did artificial respiration on her and EMS transported her to High River hospital. None of us knew what was going on, including the doctors. STARS Air Ambulance was sent to the rural hospital with a Pediatric Intensive Care Unit Team and Hannah was airlifted to Alberta Children's Hospital, in what was later determined to be a series of unexplained non-convulsive seizures in a row. In ICU, Hannah underwent a series of tests in an effort to determine what had caused this unusual seizure-type activity. Her CT scan was normal. Her blood work was normal. Her MRI was normal. Her EEG was normal. She had no history of injury. Her birth was uneventful. My pregnancy was without complications. I remember thinking, “If everything is normal, then what happened to cause a healthy child to suddenly have continuous seizure activity”. She had never had a seizure before and there was no family history of seizure disorders.

Since that day, Hannah has had hundreds of seizures of varying types. The first two types were tonic/clonic which is commonly termed Grand Mal, and myoclonic which are muscular jerks and jumps all over her body. A month later she began having atonic seizures which fling her body violently to the ground with no warning, and non-convulsive status seizures which are continuous electrical seizure spikes in the brain that cause her to lose consciousness and become unresponsive, yet there is no visible convulsions in her body. Two months later she began having a fifth seizure type called tonic seizures which occur primarily during her sleep and are characterized by sudden stiffening of all of her muscles, freezing her body like a statue.

She has been on a host of anti-convulsant medications including Trileptal, Clobazam, Keppra, Topamax, Clonazepam, Valproic Acid, Lamotrigine, and then her emergency seizure medications, Ativan, Midazolam, Paraldehyde, and Phenobarbital. A few of the anticonvulsants decreased her seizure frequency for a short time, but they seemed to stop working after a few weeks and the seizures worsened. The neurologists have also prescribed high dose pyridoxine with no effect, one round of Intravenous Immunoglobulin therapy, with a short-lived reprieve from seizures lasting 7 days, and then a Ketogenic diet. Currently, she is still taking Clonazepam, Valproic Acid, and Topamax with very little control. She has been on the Ketogenic diet since November of 2006 and this has been one of the only interventions that has seemed to decrease the frequency and severity of her seizures. We are still fine-tuning this highly complex neurological diet, and hope that this might be the key to her future.

In February 2007, Hannah had a follow up EEG at Alberta Children's Hospital and a diagnosis for this baffling condition was finally determined. Our previously healthy, happy little girl was diagnosed with Idiopathic Lennox-Gastaut Syndrome and there is no known cure.

Lennox-Gastaut Syndrome (LGS) affects approximately 1 in 100000 children between the age of 2 and 6 and is the most severe form of intractable childhood epilepsy. It is highly resistant to treatment and the prognosis is very poor. It is characterized by a specific EEG pattern called a slow spike and wave pattern, as well as multiple seizure types that do not respond to anticonvulsant therapy, and progressive cognitive and physical decline to varying states of mental retardation. In Hannah's case, no cause can be found. Every test with the exception of her EEG was still normal.

As parents, we would do anything for our children. To watch helplessly as our beautiful daughter has seizure after seizure, is our worst nightmare come true. Her tiny body is filled with liver-toxic anticonvulsants that have very little effect, her Ketogenic diet has her drinking olive oil and 85% fat, her emergency medications cause her to fall down and stagger, her drop seizures cause frequent injuries and require her to wear a helmet, and the seizures relentlessly pound away at her brain. What is happening to our baby girl?

Without knowing what is causing this disorder, how can we ever expect to stop it. We are determined to fight this devastating disease. For something to change a child's life so dramatically....something dramatic had to change! We believe that the key to unlocking the mystery behind idiopathic Lennox-Gastaut Syndrome is not just in managing seizures, but in determining the cause behind them. In our eyes, Hannah's seizures are a symptom of the underlying problem and we will never stop searching for a cure.

In June 2007 our search led us to Stem Cell Therapy. THIS IS THE ANSWER FOR OUR DAUGHTER. She has had two stem cell treatments now and is making a remarkable recovery. We hope to continue this life saving treatment.

“Don't deny the diagnosis...defy the verdict” (Norman Cousin)