Abram is TWO YEARS SEIZURE-FREE on cannabis oil and it's been 7 months since we weaned the last pharmaceutical from his body. Back then, our family hit our rock bottom after traditional pharmaceutical drugs not only failed - but further harmed our son. We had physicians telling us that our son's condition was "over their head" and eventually pointed us in the direction of Colorado and Cannabis.
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 we started Haleigh's Hope: 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.
To Jason Cranford, thank you so much for creating something that is changing so many lives for the better and for giving me my son back!
Much love, Friends. We couldn't be luckier or happier. Cannabis IS medicine.
What we use for Abram:
For those of your curious about what kind of cannabis oil/products we use for Abram, we use an organically grown from Colorado called Haleigh's Hope that is c02 expressed.. We also added in Cannatol RX last summer to try and help Abram with his self-harming issues and restless nights. With Haleigh's Hope, Abram became seizure-free and cognitively way more aware but we still struggled with major behavior issues.
Before we added in the Cannatol, Abram would sit in his bed and night and slam his body around for up to two-three hours and slam his face and head into his crib slats. When he got startled or upset he would slam his face into the floor, concrete, an end table - anything that was near. He most recently lost a tooth due to damage he did to it over a year ago but the Cannatol RX has helped immensely with his difficult self-harming days and his sleeping. Since the video below, we have also gotten a Courtney Bed so if/when he does bounce around - he is at least safe and cannot bloody or bruise his head anymore.
When we first started our journey - we did not know what we were doing and we used a product that we later found had lead in it. Then we met Jason Cranford and our lives changed for the better. I've learned a lot and his team that work for his non-profit the Flowering Hope Foundation have spent countless hours teaching me about cannabis and how to best advocate both at the state and federal level. Sebastian Cotte is their National Business Director and he has helped me immensely by teaching me how to advocate and how to speak with my Senators and Congressman in Washington DC.
The best part? Haleigh's Hope also has a private group where you can meet and chat with other people about what you are going through and who are using the same products. The staff teach you how to dose and what medications could possibly interact and how to approach your doctor with knowledge and confidence.
If you are thinking of trying "cannabis oil" - please be sure to purchase a quality product for your loved ones. We get messages often about how certain local drug or grocery stores have "CBD OIL" but I always let people know that not all products are the same. Before using anything - be sure that each bottle has a batch number on it and labs that match and prove that the product is safe and free of harmful contaminants like pesticides, mold and heavy metals like lead.
We personally only trust the products that Haleigh's Hope and Cannatol RX make. We have been able to personally meet the people who have helped my son have a better quality of life and see where his medicine is grown. I like the personal level of care that you get with Haleigh's Hope/ Cannatol and how they help people in their darkest days see the light and HOPE that is offered in their oils and sprays, literally.
I originally titled this piece "Seizure Free on Cannabis" not thinking that I should share the exact thing we are using as people could blindly go buy bad product and never see the results that we see. I do not want to further perpetuate that all oils are the same or have people believe that they can go to a health food store or a vape shop to get these products. They are NOT SAFE, friends.
Please, be careful with what you choose to put into your child's and your loved one's bodies. We decided on an organic c02 expressed product because that is what was best for Abe. Haleigh's Hope and Cannatol RX are specifically what changed our lives and everyone should know what has given us our boy back.
Thank you, Jason Cranford for all you do for our kids.
Today is like a new birthday for Abram... as it was one year ago now that we took a leap of faith and began using cannabis oil to treat our son's seizures.
With his diagnoses: UBE2A, pineal cyst and grey matter heteropia/cortical dysplasia he will never have a normal EEG nor is he "cured" of his Epilepsy. (I'm only stating that so people don't confuse his current success with not needing to worry anymore because Epilepsy is a cruel beast for which there is no cure and we must always be prepared!)
However, we have been given a great gift. We have been able to see our son thrive and grow. We have been able to wean over 3/4 of his last Benzo. We have changed minds and maybe even a hospital policy.
We have fought for law changes and have met our local Representatives, U.S. Senator and Congressman to tell them our story in hope that it helps change their mind so they help other people too.
Abram has come a long way physically and cognitively. He's giving us kisses, making sounds, growing like a weed, becoming social (and BOSSY!) And he's finally able to just BE a little boy who loves kitties, fire trucks and who thinks farts are hilarious.
If and when another seizure strikes, I know that we have amazing support because this journey also brought incredible people into our lives whom we never would have met otherwise.
Cannabis oil gave Abe a quality of life we never knew existed. I never expected to be here. I had no idea I would have to fight for law changes to get a medicine our sons doctor felt was best, yet here we are.
Abe has taught me so much and brought so much love and light into my life. Happy Seizure-Free Birthday, Bubster! In another week you turn 4! Mama loves you so much!!!!!!
We use Haleigh's' Hope and it has changed our lives.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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