Tuffy's Fight: Local father fights to keep daughter alive with medical marijuana

- They call her 'Tuffy' and you're about to see why. Her father insists that we all see how his daughter suffers multiple severe seizures and why he is fighting to get her what she needs to survive.

He says since she's tough enough to endure the trauma, he's laying it all on the line to get her the medical marijuana that allows her to be a happy little girl. It''s treatment he believes is keeping her alive despite the medical odds.

FOX 29'S Joyce Evans has 'Tuffy's' fight.

Tatyana Rivera is a busy little girl. She loves playing with her dad in the yard and she stops to take in the sounds of nature. Tatyana has autism and she does not speak . Another thing she stops for is to cuddle with her proud poppa.

"Look at her, she's happy, she's relaxed, she's not seizing,” her father,  Ricardo,said.

We have to warn you what happens here before our eyes  is so disturbing but her father insists we keep the cameras on her. He wants people to see the heartbreak, the terror, just how much his baby girl suffers from a severe form of epilepsy.

"We were going through this about 25 to 50 times a day," he said. "No one should live like this. No person in this world should live this way."

 It's a tremendous toll on Tatyana.

"I almost lost my job even though I have FMLA I had to take so much time off.  And at the time, being able to afford the medication," he explained. 

But this professional in the medical field lost faith in the slew of expensive, powerful meds that kept Tatyana bedridden at times, unable to walk, heavily sedated, or overly aggressive.

"They all failed her, or did nothing for her, or sometimes made it worse," her father explained.

But the day he saw her fading away, "That was our turning point. We decided we were going to have to do something else besides what the doctors kept telling us to do."

He says he'll never accept that this is the best Tatyana can hope for.

"We were told she wouldn't live past 9 years old," he explained. "I believe with what I've been doing she'll last a lot longer than that."

He's replaced most of her pharmaceutical meds with medical marijuana.

Cannabis bud at 300 dollars an ounce, which lasts about a month, according to her father.

Like a chemist in a laboratory he extracts  chemicals like THC and CBD  that  affect brain and nerve receptors.

"That way she can take in liquid form  being that she can't smoke it."

Cooking it down into a oil doesn't render much. Ricardo stores it in small syringes Tatyana only gets a little --4 times a day .

"I've been able to control my daughter's seizures by 90%," Ricardo said.

 It's what he's been doing the past three years but he's far from satisfied with the process.

"We need three doctors in the state of New Jersey to approve it.  A pediatrician, a cannabis doctor and a neurologist."

And  there's the out-of-pocket cost.  

"I went into debt honestly in order to help her, but you know what? I don't care," her father said.

He also doesn't care who knows how angry he is about it.

"I  was kicked out of a town hall meeting because I wouldn't stop because my daughter is dying right before my eyes and I am begging for help."

He says he's well aware of the risk he's taking.

However today, at almost 10 years old, which is past the age limit projected for her Ricardo is convinced that the cannabis treatment and a strict organic diet are the reasons Tatyana is alert  in school and calm.

"She eats, she completes more milestones and she's a happy girl."

Still not enough - Ricardo has set up a foundation in Tatyana's name called "Tuffy's Fight."

A call to action  - spreading awareness and fighting for other families to be able to access and afford medical marijuana treatment.

"Children like my daughter - patients like my daughter don't have time - no - time is not on our side."

 

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