Pubdate: Fri, 13 Jun 2014
Source: Star-Ledger (Newark, NJ)
Copyright: 2014 Newark Morning Ledger Co
Author: Paula Joana


Six months ago, I lost my precious girl. I had to make a terrifying 
decision, with her daddy, to take my 15-month-old daughter off a ventilator.

Six months ago, I learned how badly the New Jersey medical marijuana 
program really was failing.

My daughter was born Aug. 21, 2012. She was a perfect baby, cute as a 
button. I could never imagine life without her. Then I was forced to 
live without her.

On Feb. 6, 2013, Sabina had her first seizure. To say that I was 
completely terrified was an understatement. We took her to the local 
emergency room and had numerous tests done. Everything was normal.

Sabina continued to be a normal baby, even after the second and third 
seizures. We didn't understand. Then the medication started to come 
into play. Phenobarbital, a medication that is not FDA-approved, is 
what we had to give her. I hated it. We went on to Topamax then to 
Keppra. Nothing worked.

I always wanted to keep her life as normal as I could. We found a day 
care that would care for her three days a week. She loved it. I have 
never met more wonderful people than when I met the women who work 
there. They loved my girl so much. Looking back, I am so grateful she 
had that experience.

In August 2013, we finally got a diagnosis of Dravet syndrome, a rare 
and severe form of epilepsy. I wanted to throw up. I could not 
believe this. I was so mad and scared for her. What was her life 
going to be like?

My girl was a warrior, as are all kids with this haunting disease. 
Sabina could have up to 80 seizures a day. Unless she was physically 
hurt, she never missed a beat.

We went through the summer pretty uneventfully. We were even able to 
take her to Wildwood. She saw the sunset and had ice cream and put 
her little toes in the sand. I didn't know that would be her only 
time to experience that. When August came, we saw Dravet syndrome 
rear its ugly head again. She spent her first birthday in the 
intensive care unit. All I could do was cry.

September greeted us with a trip to see a specialist for a second 
opinion. We spoke about our options and we knew that medical 
marijuana was her option for a normal life.

The edible form of medical marijuana has been used to treat children 
with Dravet syndrome. Scientists say it quiets the excessive 
electrical and chemical activity in the brain that causes seizures. 
Children have been treated legally in Colorado, but New Jersey has 
significant barriers preventing the drug from reaching patients.

With no choice, we began the process. We jumped through all the hoops 
to obtain a medical marijuana card - all the charts, the test 
results, the endless doctor notes of recommendation, the psych 
evaluation. But just when we thought relief was in sight and the 
registered doctor went to submit her application, it was too late.

Nov. 26, 2013, was a night I will never forget. It was bedtime and I 
noticed she was anxious, so I took her into bed with me. We fell 
asleep. I awoke to put her into her own bed, which now haunts me.

When her dad went into her room, she was unconscious. He screamed out 
for me to get the rescue meds and call 911. My heart dropped.

Sabina was put into a coma. We learned she was brain-dead. On Dec. 2 
at 2:06 p.m., her daddy held her as her heart stopped. That was the 
worst moment in my life. A part of us died when she died.

What do I do now?

Has the medical marijuana program in New Jersey gotten better? Not at 
all. The reality is that the people in charge of the medical 
marijuana program don't have sick children. They don't have an urn 
with their daughter's name on it. They don't have a sense of urgency 
or desperation or fear dwelling in their minds. Until now.

Whatever the reason the state has is invalid. My daughter died on 
their watch. I will work endlessly to try to change the way this 
program works. I will never stop or be backed into a corner. I will not settle.

Political agendas kill people. It killed my daughter.

In six more months, it will be a year. I still don't know how to live 
without her.
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MAP posted-by: Jay Bergstrom