Harvey is our brave little warrior.
Born prematurely in July 2011, Harvey came into the world already fighting for his life–and he has never stopped. He struggled to eat with a cleft lip and palate and underwent two major surgeries before his first year of life. Shortly after his first birthday, Harvey started to exhibit strange behaviors. A neurologist told us it was nothing and his actions were behavioral. We trusted our gut and got a second opinion. Soon after Harvey was diagnosed with complex partial seizures and started medications–and failed them. We achieved some seizure control for a few glorious months and Harvey gained skills again. Just when he started to thrive, the seizures started back and this time he was thought to have Infantile Spasms.
In June 2014, just before his third birthday, Harvey was diagnosed with Lennox-Gastuat Syndrome, a rare form of childhood onset epilepsy. In the year since his diagnosis, his condition has seriously deteriorated. His cocktail of anti-epileptic drugs cannot control his seizures and so his brain and body continue to suffer everyday. He use to laugh, smile and roll around. He knew some words, would communicate and was even learning to walk. But after LGS, and the ensuing toxic yet necessary medications, he lost it all. Currently Harvey spends most of his days fighting to breathe and stay healthy. We constantly battle the side effects of his medications which contribute to his other health issues. In fact, much of the last year was spent in the hospital trying to save his life after his medications nearly killed him.
Harvey might one day be able to regain the skills he lost, and return to the smiling boy we once knew, but it all depends on controlling his seizures. One of the hallmarks of LGS is that the seizures are resistant to medication and therefore prognosis is poor. Our hope for cannabis is to obtain better seizure control and as a result a better quality of life. We know our Harvey won’t live the life we had dreamed for him, and we have grieved over it, but we believe he deserves the opportunity to have a life that is better than the one he has.
“Harvey” means “battle ready.” He has fought more wars within his own body than most of us will face in a lifetime. He does it with a strength and grace that we can only aspire to. If you remember one thing about him, it should be that he is a sweet, brave boy that deserves a chance to smile again.