Medical marijuana: Mom shares son's medical journey to find treatment in Florida

Bruno Stillo, 5, has Dravet syndrome, severe form of epilepsy

By Melodi Smith - Multimedia Journalist

MIAMI, Fla. - Five-year-old Bruno Stillo has had a long battle with his health since he was just an infant.

At the age of 3 months, Bruno began having seizures. His mother took him to the doctor and after a series of tests, everything came back negative. His seizures continued and when he turned 6 months old, his doctors diagnosed him with Dravet syndrome.

[Scroll below for a listing of  physicians who have completed the low-THC cannabis continuing medical education]

“We had no clue what Dravet syndrome was,” Jacel Delgadillo told News 6.

Dravet syndrome is the most chronic form of epilepsy, and Delgadillo was told that there was no cure.

When Bruno turned 1, he and his mother and sister left New Jersey and came to Miami, so Bruno could seek help at Children’s Hospital.

Before his first consultation, Bruno had another seizure, Delgadillo said, and was enrolled in the Dravet Clinic at the Brain Institute, "and we started different treatments from there on."

Attending a Dravet conference and meeting another parent whose son had been using cannabis oil to help with his seizures pushed Delgadillo to research the effects of cannabis oil.

 

“We had not met a child that was doing well with Dravet syndrome, because the seizures will continue and come any time,” Delgadillo said.

But at the time, Florida was not a medical cannabis state, so the only available option for Bruno was prescription medication. Many parents that Delgadillo met at the conference were moving to Colorado to seek help for their children.

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To find relief for her son, Delgadillo began saving money to move to Colorado or California. Bruno’s condition was getting worse with more frequent seizures -- up to 400 a day.

“He came to the point that one of his seizures medications was causing drug-induced lupus. He was placed on a veterinarian medication and that one I have to pay for. So it’s not FDA -approved. So we had run out of options on medications because he had tried them all, including the veterinarian,” she said.

“We really didn't know too much. CBD and THC-- we really did not know the difference,” Delgadillo said. “The CBD was helping in some areas but the THC was helping in other areas, so I needed both.”

At that point it was just cannabidiol, or CBD, which is a strain of hemp oil. But, it has a less than 1 percent content of THC, which is the active ingredient of cannabis, meaning that Bruno needed a supplement to his medication to help him.

Under the Compassionate Medical Cannabis Act, patients registered under the compassionate use registry can use low-THC cannabis. This means a patient who has seizures or cancer is eligible, with a doctor’s consent, to use a very specific type of marijuana as a treatment option.

But, for those people who tried CBD, found it did not work for them and wanted to try the THC, the laws prevented them for doing so until it became legal.

In 2014, the measure did not pass, and people in need of the medicine went looking for options until an amendment passed that included THC.

Delgadillo was like many others across the state who were hoping voters would approve medical marijuana

She continued to look for options to help her son and in the primary election of 2016, approved by 71 percent of Florida voters came out to support the legalization of medical marijuana.

Before this happened, Bruno was taking up to 20 medications a day. Now, he is taking three medicines and is making great strides in his physical therapy. He is able to maintain his balance and even use a treadmill with assistance.

His physical therapist, Cynthia Espinal, says things have changed dramatically when he goes to therapy three times a week. 

"As far as strength, balance and motivation to do things in therapy, right now we have been able to get him to, from sitting to stand, and he is able to stand a lot better now. He is able to maintain himself now, while sitting," Espinal said.

In the end, Delgadillo said all her advocating and the struggles to see Amendment 2 passed-- everything is all worth it.

“If I had to do it again, I would do everything I did just to save him. Because I know it's saving him, I. I know it's giving him a better quality of life,” she said.

She says now others at the polls are helping to get results for her little boy.

“I feel like ... it feels like victory. It feels like I won the lotto. We might not have everything that we need, but the fact that I have a kid with me-- it makes a huge difference. I have my child. I can say my child knows his surroundings,” she said.

List of Physicians Who Have Completed the Low-THC Cannabis Continuing Medical Education

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