Sara Salmon is seven years old. She lives just outside of Neepawa with her parents Gary and Susan, her twelve year old brother Wyatt, and ten year old twin sisters Samantha and Emma. Sara attends full-time kindergarten at Hazel M. Kellington School in Neepawa. She is in her second year of kindergarten with a one on one Educational Assistant at all times. Sara loves music. She loves to sing and dance, dress-up, paint, do puzzles, and play on the computer.

Sara was diagnosed with Dravet's Syndrome, also known as Severe Myoclonic Epilepsy of Infancy, when she was three years old. However, it took three years of uncertainty, testing, and experimenting with medications before a diagnosis was made. Dravet's Syndrome is a very rare seizure disorder with only about 500 known cases around the world.

Sara was born a perfectly normal and healthy baby. When she was five and a half months old, on a very hot July day, she had her first seizure. The seizure lasted for 15 minutes when she was rushed to Children's Hospital in Winnipeg . There she was put through a large number of tests including blood tests, spinal tap, and CT scan. Everything came up normal and Sara was sent home with the explanation that it was probably a febrile seizure triggered by the heat of the day.

A month later, she had her second seizure lasting 20 minutes. She was sent to and admitted into Children's Hospital for more testing. She continued having long lasting seizures every 4-6 weeks, with all tests revealing nothing.

To date, she has had about 50 episodes of febrile status epilepticus (temperature induced, long lasting seizures), with the longest one lasting 55 minutes. Each time she had to be rushed to the hospital to receive intravenous medication to stop the seizures. Many times she was ambulanced to Winnipeg . She was placed in intensive care twice and once on life support with a respirator. She has also had about 150 episodes of seizures that have stopped within 15 minutes with rescue medication that we carry with her at all times.

Sara's seizures range in type consisting of right or left sided clonic (one side of her body or face convulsing), generalized tonic-clonic (full-blown convulsions), and complex-partial (unresponsive stare) seizures. Most of her seizures are triggered by a raise in body temperature. This may be due to illness causing fever, an increase in activity like running, being in a bath that is too warm, or being out in the hot sun. Because of this, Sara misses out on a lot of outdoor summer activities.

With Sara's condition, it is difficult to regulate her body temperature. Her temperature is checked often with an ear thermometer. As with other children with her syndrome, she is also prone to recurring sinusitis and ear infections. She has had surgery for t-tubes in her ears to help alleviate ear infections.

Sara has gone through various blood tests, spinal taps, chest x-rays, CT scans, EEG's, MRI's, and muscle, skin & nerve biopsies requiring surgery. She has been under the care of many medical specialists including her pediatric neurologist, geneticist, allergist, audiologist, and ear, nose and throat specialist. Everyone worked together to try to find a cause for her seizures and lead to a diagnosis.

When Sara was three, we were referred to a pediatric neurologist from Halifax , specializing in Sara's condition. Base on Sara's medical history, he concurred with Sara's regular neurologist that she had Dravet's Syndrome. Sara was placed on a combination of three daily seizure medications: Valproic Acid, Clobazam, and Stiripentol. Stiripentol is a new drug that is not yet approved in Canada . It has to be specially ordered for Sara through the Children's Hospital from Europe .

Since we have found a balance in Sara's medications, her seizures have been much more manageable. She does and will always have seizures that are caused by a rise in her body temperature. However, these seizures are now less frequent and last only about 10 minutes long. This is still much longer than most epileptic seizures.

Along with the seizures, Sara now deals with the more secondary features of her syndrome. Sara developed normally until she was about 18 months old, when her speech and language stagnated. To date, she has the vocabulary of a three year old and speaks only words and phrases. Her speech is difficult for others to understand. However, we believe that she understands more than she can communicate. She requires updated equipment and technology to help her in her communication.

Sara's fine and large motor skills are delayed. Her movements seem rather shaky and look unbalanced in her walking and running. She requires a special bicycle/tricycle that will allow her to be able to ride with the rest of her family.

Recently, Sara has been observed by the Child Development Clinic at Children's Hospital where she has been diagnosed as exhibiting characteristics and behaviors similar to that of Autism Spectrum Disorder, another feature of Dravet's Syndrome.

A genetic blood test that is not available in Canada is now available in the United States . This test would confirm that Sara indeed has Dravet's Syndrome. The test involves testing Sara, her parents and siblings to ensure that her syndrome was caused by a genetic mutation, and not passed on genetically. The Province of Manitoba will not pay for this test to be done out of Canada , as they have told our neurologist that we should be satisfied by her diagnosis being based on symptoms alone. This is very unsettling for us.

Sara and her family appreciate so much the help that we have received. We want to thank everyone in advance for your support in making her quality of life so much more bearable.