September 24, 2016

The True Story of a 5-year-old Colorado Cannabis Refugee.


Imagine yourself as a young mother of a four-month-old baby girl. You’re at home on a Saturday evening when you get a phone call from your daughter’s pediatrician.

Your doctor proceeds to deliver news that will forever change your life.

Imagine then that you learn your child was born with a severe neurological birth defect that is so rare only 7,000 children have ever been diagnosed with it—worldwide.

The name of the condition: Schizencephaly.

It’s from the Greek words that mean “split brain,” and your doctor tells you that, in fact, almost half of your baby’s brain did not form in utero.

You are then told to expect that your child will never walk, and will never talk.

The doctor also tells you that because your daughter was born with no pituitary gland, that she will have to take growth hormone injections every night, for the rest of her life. She will also have to take thyroid hormone replacements, just to stay alive.

Lastly, you are told that your child will likely suffer from epilepsy, although it is not certain. The only thing that is certain, is that the challenges ahead for your child are tremendous.

Fast forward, now, and imagine that just one month later, your daughter suffers from her first seizure. Little do you know it at the time, but this is to be the first of nearly countless seizures.

You have no time to grieve. You learn quickly how to follow your instincts, and that you are your child’s only voice.

In the days that follow, you find yourself inside the stark walls of a cold and sterile children’s hospital, where you spend so much of your time that you essentially feel like you live there.

Your days are spent watching your child given an endless amount of prescription cocktails and tube feeds. Your nights are spent awakened at all hours, only to see your baby being poked, prodded, and put under sedation time and again.

Just when you think that maybe you’ll get to spend a week at home with your baby, and try to adjust to life outside of the hospital—your family finds themselves right back inside of those hospital walls again.

Your daughter’s seizures advance—both in severity and in frequency—until your daughter begins to suffer from a constant seizure, or Status Epileptics, a state which is intensely life threatening.

Doctors prescribe every anti-seizure medication available. Your baby is on nine different drugs, all of which are failing to control her seizures—-but they have produced a variety of ill side-effects, including dizziness and trouble breathing.

Your child is now having upwards of 100 seizures a day.

If there is ever a moment that you get to see her smile, it is so short lived that it is a challenge to remember what it was like to ever see her happy.

The doctors recommend surgery that would basically remove a large portion of the already underdeveloped brain that your daughter does have. The surgery is dangerous, and there is a real chance that your child won’t live through it.

If the seizures continue on in this same way— your daughter might die. If you go forward with the surgery that she is a candidate for, she might die from complications of the procedure.

Here you are: between the proverbial “rock and a hard place,” and you want other options.

Imagine, your feelings of hopelessness and desperation as a parent—faced with only these two treatment choices.

You begin to research, combing the internet for answers, information, and alternative treatments. As you seek options, you find something. Something…different. Something that seems as though it is working miracles for other families with epilepsy, and so you begin to learn as much as possible about this alternative therapy—it’s called cannabis medicine—a.k.a. medical marijuana.

You begin to find stories of healing—lots of them. Most importantly, you begin to find hope.

That hope is somewhat stifled though, as you realize the next issue presenting itself here, is that even if you have found a treatment that is helping so many families, you have no safe (or legal) access to this medicine where you live.

What do you do to save your child?

Do you risk your daughter’s life for a surgery that may—or may not—work, or worse, could take her from you permanently?

Or, do you leave behind your home,  your belongings, your family, your friends, and the only life that you have ever known, in the city that you were born in, to give your daughter a chance at life?

This would be a challenging choice, to say the least.

As you may have guessed by now, this is no imaginary story. This was one family’s reality. This is the true account of one family’s journey, and of their baby, Novaleigh.

Novaleigh was born five years ago, in Austin, Texas. Her parents, Barbara and Joe, were forced to make the decision: stay in their hometown with traditional medicine being their daughter’s only option, or to take a leap of faith—and move 800 miles from their home, with precious Novaleigh in tow—to seek a future of treatment with cannabis medicine. 

This is the story of one family’s choice to leave everything behind, for a plant.

Within a matter of weeks after learning about the hope of cannabis, the family transplanted themselves to Colorado Springs, Colorado, to be shielded under the safety of Colorado’s medical cannabis laws, and to have their daughter become a medical marijuana patient so that they could legally offer her this alternative medicine. Within weeks, they were set up in a new home, with new doctors—and with the new medicine, that was illegal in their former home state.

They left everything behind to give Novaleigh what her mom calls a “fair chance.”

Knowing that Schizencephaly patients most commonly pass away from seizures or infection, Barbara says she moved to Colorado with the expectation, not to “eliminate” Nova’s seizures all together, but to simply reduce her risk of having them.

Fast forward again to today and with just over two years of treatment with medical marijuana, Nova’s parent’s expectations have far been surpassed. Nova is now living with what her mom describes as “phenomenal results.”

She is watching her daughter progress. She has watched her daughter go for longer and longer periods of time without a single seizure.

Also, since moving to Colorado, the family has shifted into a routine of spending more time at their own home than in the hospital, and seemingly miraculous strides are being made in Novaleigh’s development.

Her mom says watching these changes has left her in a sense of complete awe, and that the changes in her daughter seem like they have “come out of nowhere,” but she attributes the high-potency, specially crafted formula cannabis oil (made exclusively for Novaleigh’s needs) with making all of the difference for her daughter.

For the first time, Novaleigh is talking. Novaleigh is growing. She is thriving!

One look at Novaleigh’s Facebook Community page “Supernova,” and you will see photos and videos of a child who is smiling and talking, and as her mom says, “seems for the first time in her life, to be taking in and understanding the world around her.” She has even recently learned to clap, and to wave at her mother, much to her mom’s delight!

Novaleigh is now off of all but one prescription drug (a steroid to help control inflammation) down from her original count of nine different prescriptions that she was on—but that was before cannabis.

Doctors are unable to explain exactly why, but Novaleigh’s hormone function has also miraculously begun to work on its own, and she no longer has to take hormone replacements to stay alive. She no longer gets daily injections of growth hormone, either.

Novaleigh has proven that she has—and will—continue to rise above her doctor’s original prognosis. She has shown that with cannabis use, she can—and will—have a quality of life that would not have been afforded to her without her family’s decision to move half-way across the country to save her.

Novaleigh and her family celebrated her fifth birthday this past August, and they have had yet an additional reason to celebrate just this past week, as their daughter reached yet another milestone: over 90 days seizure free.

As I spoke to Nova’s mom on the phone recently about their story, I mentioned to her that I thought she was “brave” to have left Texas for Colorado’s cannabis laws.

She said that she doesn’t consider herself to be brave, but believes that Novaleigh is the brave one. It seems, though, that this mother and daughter are both very brave.

Novaleigh is blessed and lucky to have a mom like Barbara, who followed her heart to Colorado to give her daughter a real chance at life.

She is brave for facing her daughter’s illness head-on, and head strong.

Novaleigh is brave for having the courage and the will to heal, and to live.

The definition of a Supernova is “an explosion of a massive supergiant star that may possibly shine with the brightness of 10 billion suns.”

It seems that with the help of safe and legal access to medical marijuana, that Novaleigh is an example of  experiencing an explosion in her development, her health, her well-being, and her quality of life. All thanks to legal cannabis.

My wish for little Novaleigh is that she continues to shine with the brightness of 10 billion suns, like the supernova that she is!

Click here to join Novaleigh’s Facebook community, Supernova.

Click here to follow Novaleigh’s blog.

Click here to learn more about Schizencephaly.


Author: Heather McLendon Hart

Image: Facebook, used with permission

Editor: Travis May

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