This is Abram! He was born with a rare gene mutation called UBE2A Deficiency Syndrome. This gene mutation has caused him to have epilepsy, brain malformations including a pineal cyst and cortical dysplasia, autistic-like behaviors, absent speech, malformed kidneys (horeshoe kidney), hypotonia, diastasis recti, and an intellectual disability.
As a newborn, he never stopped screaming and we knew right away that there was something wrong with our sweet baby. At first he was misdiagnosed as "colicky" or having "acid reflux" but it turned out to be something far more sinister: subclinical seizures.
For months my son suffered from non-stop generalized seizures that were firing from one side of his brain to the other. He never slept, he rarely stopped screaming and then one day he stopped making noise altogether. The doctors told us not to worry - that he was simply concentrating on learning how to crawl.
Soon, he was globally developmentally delayed and just before his first birthday, they found a large pineal cyst in his brain and within months physical seizures began to present themselves including abscence and complex partial seizures. Genetics had no idea what all of his symptoms met but we were constantly told that what was happening to our son was the cause of a larger underlying genetic condition. We were relieved when we finally got our answer in December 2015 of an official diagnosis of a UBE2A gene mutation.
We got lucky as we had a Neurologist tell us about Cannabidiol pretty early on in his diagnosis. After a couple of scary hospital stays, we were told to go to CO to try it and eventually (after failing two AEDs) we obtained CBD and the rest is history.
Our son is over a year-and-a-half SEIZURE FREE on an organic cannabis oil from CO and is doing quite well. It has had surprising side effects including a major change in his Sensory Processing Disorder, he went from border-line failure to thrive to actually eating and being a bit chunky, his generalized seizures are now just independent discharges without seizures, his cognition has increased and now - at age 4 - he is in an inclusive pre-k classroom with a 1:1 aide and is finally able to BE a little boy.
My son's seizures are held at bay for now but as he grows, I worry that we won't be able to afford the oils at the ratios that are legally available to us with our current law. We still struggle with self-harming behaviors (head banging, punching, slamming himself around in bed) and we have seen these issues change immensely for children in states that have access to other cannabinoids including THC, CBN and THCa.
Our doctors should be making these choices for us, not our legislators. When you have a child with a medically complex issue, the medical professionals are literally learning from your family. We have joined Medical Research Programs at the Mayo Clinic, The University of Iowa and The University of Chicago because our son's condition is so rare.
If Abram's story of cannabis use helping his seizures due to brain malformations can help another little boy overcome the hardships of this diagnosis, our struggles and our fight to change medical cannabis laws is worth it.
Please let your Legislators at the state and federal levels know that you support medical cannabis and help us change these laws. There is always hope for families in situations like mine and cannabis happened to be our beacon in the dark.
You can follow his story here: http://ourabrammayhem.weebly.com/
Patient & Caregiver Stories
These stories represent real Iowans suffering from complex medical conditions that need access to medical cannabis right here at home.