2 Your Health From Marijuana to Medicine - WCBD-TV: News, Weather, and Sports for Charleston, SC

2 Your Health From Marijuana to Medicine

2 Your Health From Marijuana to Medicine

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CHARLESTON, SC -

Right now in the United States, there are 20 states that say if you are sick and a doctor verifies your illness you can be prescribed marijuana to treat the disorder, pain or seizures. And there are at least 9 states with pending legislation for medical marijuana.

But in South Carolina as the conversation about medical is beginning, a Summerville family is leaving this state over this issue.  Amanda DeNobrega and her husband are taking 3 year old Julian away from his grandparents and cousins to hopefully improve his quality of life. 

News 2 Anchor Carolyn Murray sat down with Amanda DeNobrega and talked about what this mother believes will happen when marijuana is used as medicine.

"I had slightly high blood pressure in my last couple of weeks but it was nothing"

"my pregnancy was completely normal"

"I delivered him at 39 weeks so it wasn't early"

But Amanda De Nobrega says from the moment Julian entered the world Amanda says he did not look right to her.

"his color he just did not look like a healthy baby when he came out"

His life has been a battle.  He was not expected to survive 48 hours after birth.

"He has a few diagnosis technically the brain injury is called hypoxic ischemic encephala which doctors just call HIE and the second would be epilepsy" Amanda said.

Epilepsy, a neurological condition which affects the nervous system unleashes an unyielding assault on Julian's body and brain. 

"We went through a dozen medications and the seizures have just continued to get worse," Amanda said.

The seizures happen all day, every day, Julian has hundreds each week. He is having one in this video

"A year ago he had 10 a day but now he may have 30-50 a day," Amanda said.

And even while sitting and talking to Amanda when our cameras weren't rolling Julian had one of those seizures.

It lasted about a minute.

"They are more intense now they are longer now"

So Amanda and her husband are moving their son, their family, their lives to Colorado to seek help here at the Realm of Caring a non profit organization that grows and prepares alternative cannabis oil therapy to approved patients.

"Specifically more than any other condition or illness it helps epilepsy" Amanda said.

The oil is called Charlotte's Web and it's like gold to families in need.

Six year old, Charlotte Figi is diagnosed with Dravet Syndrome; a catastrophic pediatric epilepsy. She suffered brain damage. She used a feeding tube, could not talk or walk, and suffered from more than 300 seizures per week.

But look at Charlotte now, a year later she walks, talks, and is at 99+% seizure reduction.

"It is very high in cbd which is caribadial and low in THC which is what most people associate with getting high," Amanda said.

"I know that he has been seen by local doctors how receptive have they been?"

"From a doctors perspective they want studies they want facts they want proof."Amanda said.

We took our questions about marijuana as medicine to the Medical University of South Carolina,

"The initial reports though the numbers are low are that cbd oil does have anti seizure properties" Dr Smith said.

A marijuana plant is made up of more than 500 chemical compounds. many of these compounds are cannabis, which bind to receptors in your body and then affect your immune system and brain. researchers at gw pharma have pinpointed two main cannabis-THC and cannabis, or cbd...-as beneficial. the biggest difference: cbd doesn't make you high

"There is so much excitement about this cbd oil that the FDA in November gave gw pharma which makes epidelex to be considered for orphan drug status," Dr Smith said.

A drug labled as orphan drug status means that the food and drug administration could a drug to administered to patients right here in south Carolina even though marijuana is not approved for medical use in South Carolina.

So families would not have to move away to find treatment.

"Have you had an opportunity or has anyone had an opportunity to speak with lawmakers around medical marijuana in south Carolina?"

"I have talked to a number of families who are interested and i think it is important for families to speak the legislators." Dr Smith said.

It is time for Julian's lunch.  This is the only way that Amanda has been able to feed her son since he was born.

Amanda is hopeful that once she and her husband get Julian to Colorado Springs, he will join the list of dozens of children waiting, hoping, praying, that this plant will give their son new life.

News 2 wanted to know what our state lawmakers thought about taxpayers moving away from this state to find medical treatment for their children.

Summerville representative Jenny Horne and Senator Tom Davis are both studying the issue closely and now have a meeting scheduled with Dr. Gigi Smith, the MUSC doctor you saw in our report.

News 2 will report the result of that meeting.

The DeNobregas are hoping to raise money to cover the cost of the drive to Colorado and their initial household expenses. Because Amanda will be trained to become Julian's caretaker, they will not have that nursing expense.

If you would like to help the family with the cost of moving to Colorado for Julian's treatment:

Julian's Journey

Minky's Social club

2450 highway 17A

Summerville

843-460-7521

Rain date is February 23rd

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