Since then, we have learned an official diagnosis of all his symptoms: UBE2A Deficiency Syndrome, a rare genetic condition that affects only boys and of which there are under 40 reported cases in medical literature worldwide. We also discovered that the fundamental cause of Abram's seizures and intellectual disability are due to a congenital abnormality in his brain called cortical dysplasia.
We spent the first three years of his life in and out of emergency rooms, had numerous and lengthy hospital stays due to seizures, pushed for therapies and fought tooth and nail for something (anything!) to go right for Abram. He suffered immensely as an infant - always seemed to be in pain, never slept and was self-harming as soon as he was strong enough to get up on all fours. He was written off as a "colicky baby" and I - "a worried, first-time mom". To the parents struggling out there: trust your instincts and NEVER be afraid to tell a doctor NO or get a second (or fourth!) opinion.
After cannabis: we have had zero hospital stays due to seizures, we have had NO ambulance rides, we have weaned all of his pharmaceutical drugs and Abram was able to start pre-school in an integrated classroom. Every appointment since we started using cannabis has been a major improvement. The cystic lesion in his brain has stabilized, his kidneys are functioning perfectly, he is finally ON the growth chart (and even a little chunky when before he was way too little). He's grown over 4 inches in the last year when our Endocrinologist had actually encouraged us to do growth hormone shots just a year ago (to which we declined - as both his parents are short and his condition includes short stature). But.... he GREW. He's on the charts.
He's also saying "MAMA" after having lost it to Klonopin and seizures over two years ago. He has worked SO HARD and I have waited so long to hear his sweet little voice say my name and there is absolutely no question in my mind or my heart that cannabis is the reason for all of his improvements. (Well, cannabis and our dedication to outpatient therapies every single week for four years!)
My little boy can run, ride an adaptive bike, jump and play - all thanks to a plant. Cannabis gave us hope when we had none and we will forever be grateful to the people we have met and the journey this crazy ride has taken us on.
Having a child with a rare diagnosis and special needs can be isolating and scary but Abram has shown me a world filled with love, determination and kindness. He has led me to an entirely different life and I couldn't be more thankful for it. This little boy was put on this Earth to teach me how to love, forgive and fight hard for what I believe in.
Before Cannabis, he had a lifetime of being told what he wouldn't and couldn't do and now he proves everyone wrong! He continuously improves his goals and smashes them to smithereens. Abram is my own personal little hero - proving to me everyday that there is always hope, love and lots of hugs if you know where to look.
Much love, Friends. We couldn't be luckier or happier. Cannabis IS medicine.