Desmond was born on June 26th, 2007 in Silver Spring, MD, a healthy 10lbs baby boy. He hit all the milestones and was a happy baby, until March 2nd 2008 Desmond was 8 months when he had his first seizure I will never forget it, its the day that changed our lives forever. The seizure lasted 24 minutes and had to be stopped with medical intervention. That was the first of many ambulance rides and hospital stays. Five years later Desmond continues to have daily seizures despite the mountain of medications administered to him every morning and night.
Since the age of 8 months, Desmond has tried 8 different anti-epileptic drugs as many as three at a time. We kept him on a very strict diet for 2 years which failed to control his seizures. Some of the medications even made it worse. We also pursued the option of surgery. However seizures are originating from both sides of his brain, so surgery is not an option for Desmond.
The drugs further impede his development and caused him to suffer heinous side effects such as, hair loss, dizziness, visual disturbances, confusion, fatigue, sleep disturbances, gait ataxia, memory problems, poor coordination, excessive drooling, mood swings and aggression. Statistics tell us that the chances of using a subsequent pharmaceutical that will stop his seizures is very unlikely, which is why we are pursuing the use of medical marijuana.
In 2012 Desmond completed genetic testing and was diagnosed with Dravet Syndrome. Unfortunately, there is no cure for Dravet Syndrome and it has a poor prognosis. Until now we had very little hope of Desmond ever becoming seizure free. But we discovered several cases of children with Dravet Syndrome in California, Colorado and Michigan that have been helped by Medical marijuana. We feel that there is a chance to get our son back. There is compelling evidence, both anecdotal and scientific, that indicates the use of a high-cannabidiol (CBD) and low-tetrahydrocannabinol (THC) form of medical marijuana can greatly reduce and, in some cases, stop seizures without the psychoactive side effects of street marijuana.
Presently Charlotte's web strain of medical marijuana seems to work when nothing else worked. The type of medical marijuana (Charlotte's Web) proven to work well with children having Dravet Syndrome is much safer than any of prescribed anti-seizure medications Desmond has taken.
Although it would be tempting to move to Colorado and it would be in Desmond's best interest. It would be an extreme hardship for our family to move to Colorado. We are hoping medical marijuana will become legal and available in Maryland. Waiting 2 to 3 years might not seem like a long time but when you see your child suffer it seems like an eternity. So we are hoping to have this available to us sooner rather then later.
I'm writing this letter to bring awareness to our struggles and show the importance of making medical marijuana available to minors on the grounds of epilepsy.