I had the opportunity to speak at a press conference this week put on by Iowa's only licensed medical cannabidiol provider. I was able to share Abram's story and did my best to sum up the last 5+ years of our life in under three minutes!
Afterwards, I was interviewed by channel 5 news - you can see that piece below! (Just click on the picture). The interview took place in the elevator because Abram refused to be interviewed anywhere else! haha! They are in fact his favorite place to be.
My speech went as follows:
My name is Erin Miller and my son, Abram has been a registered Medical Cannabidiol patient since 2015.
Abram has a rare medical condition called UBE2A Deficiency Syndrome. It is a genetic disorder that has caused him to have epilepsy, brain abnormalities, Kidney defects, immunodeficiency, and autism. So far, less than 50 people world-wide have been diagnosed with UBE2A. So, Abram’s medical team are officially learning from him and not vice-versa.
Abram has had great success using CBD to treat his seizures. Today, he is currently 2.5 years seizure-free!
By using cannabis, we were able to wean him from a psychotropic drug called Klonopin. A benzodiazepine that increased his seizures, stole his words and caused him to regress physically, mentally and cognitively.
Today, Abram is 5 years old and can finally say “mom” again. He is making new sounds, knows over 50 signs, and he can identify most of the letters of the alphabet! I have no doubt that medical cannabis has given my son these gifts.
However, Abram still struggles. Along with the numerous medical conditions come behavioral issues, self-injurious behavior and outward aggression towards others.
In February, Abram began to exhibit these behaviors at school. On his worst day, he hit his school staff and peers over 50 times and he hurt himself over twenty times - resulting in huge bumps and major bruising on his forehead. As a parent, it is heart wrenching to watch. Our son’s behavior flipped like a switch and no one knew why.
We reached out for medical help but Abram’s numerous doctors and specialists could not find an issue in which to treat him acutely. It was suggested that we trial an opiate medication to rule out pain from his brain abnormalities but we decided the side effects of that medication were too risky after what Abram has already endured. I don’t feel comfortable putting my child on an opiate when the rest of the country is begging to get OFF of them.
In states like Minnesota where autism is a qualifying condition, many families see phenomenal improvements in severe aggressions and self-injurious behaviors. Especially in states where they have access to unhindered dosages.
After much discussion with Abram’s medical team, we decided to increase his daily CBD:THC and added in a third lunch-time dose to see if it would help Abram at school.
The results have been pretty astounding. His daily aggressions and self-injurious behaviors are slowly starting to go down. He is sleeping better. He is making more sounds and mimicking us. When we read books to him at night he is starting to copy the sounds of the animals that we read about.
Last year, I shared Abram’s story with the Medical Cannabidiol Advisory Board and why we need them to recommend the removal of the 3% THC cap. With the current law as-is, I will be unable to give Abram an effective dosage of cannabis oil to treat his numerous health issues.
By Christmas, our program will be up and running. Without changes to our current law - nearly all of the patients who have approved conditions will not be able to get products to effectively treat their conditions, including my son.
We need legislative action NOW - not next year. To make families like mine wait another year is unjust and cruel. I’ve already been fighting for access more than half of my son’s life already. Please help us.
Thank you for listening to our story.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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