Project Description

Alexis’ Story

In January 2005, we became first time parents as we welcomed Alexis into the world. There were no pre- or post-natal complications, other than a two-vessel umbilical cord. She was perfect in every way. One week before she turned three months old she had her first seizure. She had been sleeping in a warm room for three hours, and as we moved her to a cooler room the seizure began. It was in her right arm and lasted fifteen minutes. The next day, after a bath, she had another seizure, this time affecting her left arm and lasting five minutes. Almost a month later, she had three more partial seizures in her left arm. Then on April 28th she had her first generalized tonic-clonic seizure, which started in the bath and lasted 15 minutes. Alexis began a difficult journey that would change all of our lives.

She began phenobarbital after several more partial seizures and another 14 minute generalized seizure. After two seizures lasting 30 and 35 minutes we switched to Topamax. Before she reached her first birthday she had two seizures that each lasted an hour. She also began having brief myoclonic seizures.

Despite a visit to a specialist and a 48-hour video-EEG when she was 14 months old we were still without a diagnosis, and still believing these were childhood seizures that she would outgrow. We then went down the slippery slope of trying every anti-epileptic medication including Trileptal, Keppra, Lamictal, and Zonegran. Until 18 months of age her development had been typical but she was now having 20-40 generalized seizures a month, averaging 1-2 minutes. Then she began to regress, losing her speech and ability to walk. We were referred to another specialist and at that appointment she was diagnosed with Dravet Syndrome.

Alexis had just started the ketogenic diet, and she remained on it for two and half years. During that time we added Clobazam and Stiripentol (Diacomit) and she went six months without a seizure. It was then that she began to regain some of her strength, and started walking again.

Today, Alexis is seven years old. She is very delayed in all areas. She is non-verbal and has ataxia. However, she has continued to make slow steady progress over the years. She has benefitted from intensive physical, occupational and speech therapy. She takes Clobazam, Stiripentol, and Topamax. She averages 10-20 seizures a month, all during sleep, and lasting roughly 30 seconds. She experiences eye-fluttering and absence seizures during the day.

We have all come a long way since this journey began. We were once afraid to give her a bath. These days we take more risks, trying to negate the effects of seizures and making sure she lives each day to the fullest. She has a younger brother and sister, and a loving and supportive extended family. She has given us all a perspective on life that we would never have had if things had turned out differently. We have crossed paths with people we would never have known. We are inspired by those who are working everyday towards a cure. We have hope.