Written by Fighting Life-Threatening Disabilities With Cannabis – Blind With Diabetes Insipidus & Schizencephly:
Debora and Ken are two awesome people with one heck of a story regarding Bre’Anna. They’ve adopted multiple children with disabilities over the years. It’s people like them that make the difference in this world for so many kids that are considered ‘unadoptable’ – literally unwanted due to their disabilities. It’s estimated that over a million pregnancies are terminated annually in the U.S. due to amniotic fluid giving that unwanted news to expecting parents – their unborn child has a birth defect that’s likely going to cause developmental delays or more. Having been honored in the past with personally spending years on the board of a National Adoption Network for children with Downs Syndrome these statistics were no surprise to me today when looking at recent numbers. I, like many parents, can not imagine making a decision to terminate a pregnancy because my child might not be ‘perfect to the world. Debora and Ken took that a step further and decided to take it upon themselves to give this world the love it needs and take care of Bre’Anna. They love her like the miracle she is regardless of what label society has managed to create for her! Taking a look at the following chart for adopted children with Developmental Disabilities shows you where these beautiful miracles of life end up. A whopping 19% are internationally adopted and only 35% are adopted by Americans – the balance goes into foster or state care for life. Without a doubt, both Debra and Ken are American heroes.
Special needs kids in my opinion are way cool – they love you like nothing else. Their desires are so minute in comparison to our other kids. While a child with delays may only desire his or her iPad – a child at the same age without any known disabilities will generally have a laundry list of wants and needs daily if you stop and think about it. Before we hear from these awesome parents about beautiful Bre’Anna let’s take a look at statistics for foster care – the U.S. Dept. of Health and Human Services considers all kids waiting for a home to be in ‘Foster Care’ even if they have not yet been assigned an actual foster parent – many are in what is called receiving homes. Disabled kids, generally they are in a state hospital or facility for care before adoption and not a private home, except for the cases of when biological parents give up children or they’re taken due to negligence or other reasons. Now here we see an incredible difference. 58% being adopted in America but still, 18% being adopted internationally – a statistic many don’t realize. Only 9% end up in foster care for life unlike 46% of disabled kids. 10% are reunited with their parents and only 8% are adopted by a family. What a drastic difference between the two – a type of discrimination right off the bat for these young warriors. Wow…. now let’s hear their story!
“We were told about Bre when she was just 10 days old, we were told that she had Diabetes insipidus and Schizencephly. Schizencephly is a developmental birth defect. It is characterized by abnormal slits or clefts in the cerebral hemispheres of the brain. People with clefts in both hemispheres commonly have developmental delays, delays in speech and language skills, seizures, and problems with brain-spinal cord communication. Bre’Anna started to have seizures at the age of 3 months.
We were told that she was totally blind as well. She was a happy baby and enjoyed eating her baby food and taking her bottles. Bre’Anna has never been able to reach for a toy, sit up on her own, and if you sit her up she has to be propped so as not to fall over, she has never crawled, nor rolled over. She is in total care. However, she is the love of our life.
At the age of 16 months, Bre had some major seizures and was on many anti-seizure meds, and they snowed her with phenobarbital and she then lost the ability to be able to eat anything by mouth and then spent the next several years in and out of hospitals just trying to get the meds right.
She has now been on the ketogenic diet for the past 3 years and the seizures did get a bit better and the number of meds that she was taking was reduced by taking away 7 of them after the diet was put into place, but not before she went into the ketosis fits, like uncontrollable laughing for hours upon hours for days and then uncontrollable crying for hours upon hours for days to where she had to be sedated.”
“The seizures started to come back in full force again and the doctors started to talk brain surgery and that is when we were able to finally get started on the Bottle of Love Compassion program of CBD oil and this took place in Nov of 2016. At this time she was still having about 30 to 35 seizures a day and after starting the oil they were reduced to about 6 to 10 a day. Bre is now 6 and 1/2 and she is starting to have more seizures daily, however, we are using the Bottle of Love CBD oil from Juston Purcell at Love Light Labs and also a tincture made with online video help from Tim Fratto at Healing of the Nation in Oregon, which both really help to keep her calm during the day but the seizures are strong and very upsetting to her and wears her out especially at night.”
There are so many companies online that are claiming CBD and cannabis oil to be ‘cures’ for Epilepsy.
I want to nip that myth in the bud right now. It’s awesome medicine that nothing else beats in my opinion. But, when you have a person with diagnosed Epileptiform brain waves positive on an EEG test – that diagnosis remains for life. It may be ‘controlled Epilepsy’ but it is never ‘cured Epilepsy’ unless of course the specific portion of the brain causing seizures has been surgically removed and ALL medication has been ceased and a period of seizure control is present. That would include ceasing cannabis as medicine – but not as a dietary supplement as we now know that endocannabinoid deficiency syndrome is a root cause of epilepsy itself.
So, to say the epileptiform wave would be no longer there solely based on cannabis provision as medicine is an assumption not yet based on the scientific study – It would have to be proven for quite some time with more than one controlled patient. In my own case, it’s been nearly 3 years since a positive EEG, but I’ve still had a few seizures which proves that although doctors can’t catch it in a short test – it’s still there.
I want to be firm on this as I see too many people attempting to wean off all medication too quickly because they’ve been told an oil will ‘cure’ their child. I would love to be proven wrong, this would of course take decades of use that’s tracked in studies and much more than a slogan of a company.
I feel honored to share the story of how Bre’Anna created love within her family and how Cannabis has helped her. Like many her mom is still searching and working with her protocol to dial it in for optimal seizure reduction. Living in legal Florida isn’t all that easy for cannabis patients. Experiencing the lack of enthusiasm myself has been sort of a bummer while sharing posts about patients in need of raw materials such as the trim from the plant’s bud. Many use this for making cannabis budder or tinctures. Finding it in many of the legal states isn’t as easy as many readings from abroad think – but much easier than it would be in a country that would look to execute a person for merely growing a plant.
She’s beautiful. Cannabis saves and changes lives every day. A plant that grew without any human assistance put here on this earth for children like Bre’Anna and for adults like myself and so many others!
Mike Robinson, Medicinal Cannabis Patient
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