“She will look at me, smile and say ‘mama.’ And that is a gift that gives me a feeling I will never be able to describe.“
In
the age of medical cannabis enlightenment, Colorado is becoming a place
where miracles happen. The story of ‘Super Nova’ represents the hope,
challenges and lives transformed of parents desperately seeking to heal
their suffering children – in a state where nascent freedom battles the
entrenched forces of oppression.
The
Free Thought Project obtained an exclusive interview with the mother of
Nova, a beautiful 5-year-old girl born with a very rare condition
called Schizencephaly. Nova’s mother, whom we will refer to as Barbara,
told us about her journey from Texas to Colorado to save her daughter’s
life, and even give her the gift of laughter.
Barbara is documenting Nova’s incredible story on Facebook, where she has gained more than 61,000 adoring, supportive fans. As she describes on her website, sweetsupernova.weebly.com:
“When Nova was four months old, we got the phone call on a Saturday night, from an endocrinologist, asking us if we had a minute to sit down and talk.
My world was flipped upside down when she told me more than half of my child’s brain hadn’t developed during pregnancy. Born without a pituitary gland, legally blind, and with a large unilateral cleft consisting of almost the whole right side of her brain.
She would never sit, walk, talk, and she would most likely suffer from epilepsy. She would have to take growth hormone shots every night in her stomach back and legs, she would have to take thyroid pills and steroids to keep her alive, and while there was a chance she wouldn’t have seizures, they were more likely to happen than not.”
At five months old, the first seizure happened, while Nova’s dad was giving her a bath. It only got worse from there.
“For the next two years, on top of all of her other medical complications, she would suffer from endless seizures of all kinds. She spent many of those days in status epilepticus. Status means that you are in a constant seizure and this is extremely life threatening. If she wasn’t in status, the breaks from having a seizure were few and far in between.
If there was ever a moment I got to see her smile, it was so short lived that it was becoming a challenge to remember what it was like to ever see my daughter happy. By the time she was one, Novaleigh was having over 100 seizures a day.”
The outlook for
children with schizencephaly is grim. Some patients are stillborn,
others are “not compatible with life” and others succumb to
medication-induced organ failure. Barbara has connected with parents of
children suffering from this condition, and many have lost the battle.
By
the time Nova was two years old, she was having all types of seizures
and was taking six anti-seizure medications. But they weren’t working.
Doctors had turned to simply trying to sedate her, including the use of
benzodiazepines – potent psychoactive drugs known through names such as
Xanax and Valium.
If Nova wasn’t in a state of seizure, Barbara
says the cocktail of drugs kept her in an immobilized, completely
unresponsive state, with no apparent awareness of her surroundings.
Barbara tearfully described a moment when she tried to get Nova to play
with some small bells, lifting Nova’s hand to touch them. But Nova, eyes
rolled to the back of her head, just let her hand drop.
Barbara
began to “question how [Nova] could ever have a quality of life.” After
several MRI and EEG scans, the Texas neurologist said Nova was a good
candidate for brain surgery called lesionectomy, which would remove most
of the brain she had left. There is no guarantee it would work, and the
extreme procedure could result in Nova’s death.
Barbara
initially agreed to the surgery, feeling hopeless about her daughter’s
continued existence or the possibility to have any quality of life.
However,
the year was 2014, and Colorado was making big news with its
legalization of recreational cannabis. This enormous step for freedom
was also helping to galvanize awareness about medical cannabis,
especially in the field of childhood epilepsy.
Barbara had the
strength and the intellect to perform her own research, reading
peer-reviewed scientific studies on PubMed and elsewhere. She connected
with people who were finding success in medical cannabis where other
drugs failed.
Barbara came to the conclusion that she could not
allow the surgery until she tried this plant-based medicine. It was
working wonders for many children suffering with unrelenting seizures –
without the debilitating effects of pharmaceutical drugs.
One day,
in a pivotal moment, Barbara’s friend said, “What are you waiting for?”
Barbara and Nova’s father packed up their belongings, left everything
else behind, and moved to Colorado Springs.
“We had to try cannabis oil first. You heard the stories everywhere, on the news and on the internet. Parents claiming that their children were saved from oil made from cannabis plants. To some it sounded far-fetched. Some didn’t believe we would actually have the guts to go. But more people had our backs completely, and supported our decision ten-fold.
We packed our house, put Nova in her car seat, and we left our home in Austin Texas, the place we had lived our entire lives and swore we would never leave. We left our families, had to break our leases, and say goodbye to the place we were born and where we grew up, the only place we ever knew.”
After three days, Barbara
procured CBD oil, which is high in the cannabidiol (CBD) compound.
(tetrahydrocannabinol, or THC, is the other major compound). It was a
whole plant extract, so it contained some THC as well.
Nova had a
bad reaction to the high-CBD oil, which made her seizures even worse the
next day. Barbara’s hopes were almost crushed. But she found some
parents treating epileptic seizures with THC oil, which she then tried
on Nova.
The results were immediate and miraculous.
The
very first time Nova got a 10 milligram dose of THC oil, she “lit up
almost immediately.” She smiled and laughed. After a day, the seizures
stopped. Barbara announced on Facebook that Nova had, for the first time
since diagnosis, gone 24 hours without a seizure. Amazingly, this
little girl – who was having 100 seizures a day – went to having one
seizure episode every 3-4 weeks.
“My daughter has experienced a 99 percent reduction in seizures. She is happy, she is sitting up, she is trying to STAND up, she is saying “mama,” and she even looks up at me with her big blue eyes. She will look at me, smile and say “mama.” And that is a gift that gives me a feeling I will never be able to describe.”
For
one and a half years Nova received a high-THC, low-CBD whole plant
extract. During this time Nova’s mother weened her off the anti-seizure
pharmaceutical meds, beginning with the milder ones. Nova was making
gains in speech and movement, but with every seizure at the 3-4 week
mark, most of those gains were virtually lost.
About eight months
after starting cannabis treatment, Nova had to go to the hospital, but
the reason was nothing short of miraculous. Nova’s pituitary gland actually started working on its own,
producing endocrine hormones necessary for life. Nova had a secondary
condition related to schizencephaly known as Panhypopituitarism, described as “a condition of inadequate or absent production of the anterior pituitary hormones.”
“The growth hormone injections, sodium pills, and other steroids are life-long therapies and the doses increase with age. We have gotten no explanation, but Novaleigh began making growth hormone on her own after being on cannabis for eight months and was taken off of the growth hormone shots. We were shocked…
It’s safe to say she is safe from ever needing hormone replacements again. It goes against everything that her endocrinologist has ever been taught. On several occasions, she’s thrown her hands up in the air and just told me… ‘I don’t know. I don’t know, I don’t know.’ She isn’t allowed to give the credit to cannabis.”
Around this time, Barbara was approached by Bob Eschino, founder and president of Incredibles,
a Colorado company “recognized as the number one infused edible in
Colorado.” Mr. Eschino asked Barbara, ‘if you could have any cannabis
oil you wanted, what would you give Nova?’
She responded with, ‘as
little CBD as possible.’ Weeks later, Derek — a partner at Incredibles
and their “lab genius” — produced a distillate of pure THC infused in
oil. They called it Supernova.
From the time of the first dose, Nova went five and a half months without a seizure. This was the answer to Barbara’s prayers.
Barbara
tearfully described how Nova underwent a steady progress in movement
and speech. She can go from laying to sitting, now says ‘dada’ and
‘mama,’ has learned to clap, identifies her toys and is looking around
with the curiosity of a happy child.
For the past four months, Nova has not had to take a single pharmaceutical anti-seizure medication. She no longer has to get nightly growth hormone shots or take Desmopressin sodium medication or Levothyroxine thyroid hormone.
“Since her seizures are gone she is learning to play. Her favorite things to do are practice standing with her daddy, getting dressed, playing with her rattle, and dancing while I hold her upright in my arms. She also likes to have long talks- babbling at me with such a happy tone and disposition that you can’t help but to laugh from the warm feeling in your chest.
I finally know who she is because of her cannabis oil. She is a spunky, fun, happy little toddler full of energy and love and light and when you look at her now, you would never be able to imagine the horrible things she used to endure every day.”
Nova
receives 30 milligrams three times a day, which is a relatively high
dose of THC oil. But the alternative – Nova having constant seizures,
living in a virtually paralyzed state through pharma meds, or undergoing
the high-risk brain surgery – is unthinkable.
Since beginning the
Supernova THC oil, Nova has experienced one seizure episode which was
due to complications from an misdiagnosed infection. After treating the
infection, Nova is back on track and has been seizure free for more than
a month, as of this writing.
Barbara has big dreams for Nova and sees a long life ahead of her, as long as she has access to the miracle of cannabis oil.
“This
is something that should be available to all children- and my child is
living proof that cannabis oil DOES work. Better than anything I could
have expected.
Our lives have been changed forever, and
every other child that is suffering so unfairly deserves nothing but the
same. I hope that Nova’s story can somehow make a difference.”
“I don’t live in fear anymore that Nova will die when I go to sleep.”
But
even in Colorado, there is no guarantee Barbara will always be able to
access cannabis oil through “proper channels,” as the forces of
oppression and irrationality haunt the lives of those seeking to heal
their children.
The U.S. Drug Enforcement Agency (DEA) regularly
threatens doctors who dare help parents access medical cannabis for
their suffering child. Shockingly, doctors cannot even mention medical
cannabis or acknowledge that it helps a child, for fear of losing their
license. Even Nova’s neurologist, having witnessed her improvement from
100 seizures a day to zero seizures, must remain silent on medical
cannabis.
To legally treat Nova, Barbara must acquire a “red card”
which has to be signed by two doctors and renewed every year. Her main
physician is proud to sign the red card, but one co-signer has already
dropped out due to government threats, leaving Barbara to search for
another who can challenge the tyrannical federal agency.
The DEA and prohibitionist cheerleaders would rather see kids like Nova in a paralyzed state punctuated by constant seizures, or die from the toxicity of pharma meds, than accept that a child can live, smile and laugh thanks to the cannabis plant.
Adding to the absurdity of
DEA’s position that cannabis has “no medical value” is the fact that the
U.S. Dept. of Health and Human Services holds a medical patent
(#6,630,507) on cannabis compounds as neuroprotectants. Apparently,
this didn’t get around to the DEA when it had an opportunity to
reschedule cannabis in 2016.
Barbara believes about 200 families
have moved to Colorado for their epileptic children, and that number is
growing. There are currently 349 minors on the state’s Medical Marijuana
Registry; most have epilepsy but some are taking medical cannabis for
cancer, pain and autism.
Barbara knows one other family who moved
to Colorado about three weeks ago to treat their child’s schizencephaly.
After the third day of low-THC treatment, their 1-year-old is already
experiencing improvements.
Not all families are so lucky.
According to Barbara, some parents who want to move from prohibitionist
states to Colorado for their epileptic children are actually intimidated
by their doctors. They threaten to turn parents in to “authorities,” as
they happily pump the kids full of debilitating psychoactive pharma
drugs.
Indeed, the cannabis plant – used medicinally and
recreationally for thousands of years – represents a threat to the
corporate oligarchy. Big Pharma, knowing medical cannabis is a threat to their profits, actively works against cannabis legalization at the state level
– donating hundreds of thousands to disinformation campaigns. Their
efforts failed in all but one state in the 2016 election cycle, but they
have a strong ally in the DEA.
In a world connected like never
before, the power of knowledge is proving to be a potent force against
the drug war establishment. Prohibitionist myths are crumbling. Doctors
are embracing the potential for medical cannabis to treat ailments where
other medications fail or cause harm. Politicians are defying the law
to bring help to suffering children.
Please visit Super Nova’s Facebook page
and share the amazing story of 5-year-old Nova, so others can learn
there is hope for their children. The more knowledge spreads, the more
power builds in the people to overcome those who stand in the way of
health and freedom.