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Grieving Hopatcong Parents Turn Pain at Baby's Death into Action

Philip and Paula Joana's baby daughter died of Dravet Syndrome in December. In less than two months, they've turned their grief into serious action.

Sabina Rose Joana (Photo/The Love Nugget Foundation)
Sabina Rose Joana (Photo/The Love Nugget Foundation)
Little Sabina Rose Joana was only 15 months old when she died on Dec. 2 from Dravet Syndrome, a rare epileptic condition. Her parents, Philip and Paula Joana of Hopatcong, channeled their grief into action when they started the Love Nugget Foundation, to publicize the condition that took Sabina Rose's life.

In less than two months, the organization has done magnificent work in raising funds to fight the disease. 

The Joana's Facebook page, with over 2,500 'likes' since its start on Dec. 6, is hopping with activity. The Love Nugget Foundation has become a registered non-profit group, while the Roxbury Interact Club raised $1,300 last week at a movie night for the cause, and three men will be running a 100-mile ultramarthon to raise funds.

The Joanas believe that a form of medical marijuana might've saved their child's life. To that end, they were trying desperately to get Gov. Chris Christie to allow that type of marijuana to be used in New Jersey for children who could benefit from the drug, they said on their website. It's an issue to which they are still dedicated, but for now, they're focusing on publicizing Dravet Syndrome.

For those who want to lend a hand, the Love Nugget Foundation is selling handmade beanies, in purple, the organization's official color in memory of Sabina Rose.

The fundraiser, called 'Beanies for Bean' - Bean being the Joanas nickname for their baby daughter - offers the handmade hats in one-size-fits-all for adults, and custom sizes for children. The cost is $12, and they can be ordered from the Love Nugget Foundation's website.

B B January 24, 2014 at 12:37 PM
@genesko you need to educate yourself as to what medical marijuana is. Its not like the baby would be tokin on a joint and listening to the Dead. Its in a pill or liquid form just like any other prescribed medicine like percocet.
Josh Dubnick January 24, 2014 at 12:39 PM
I think a lot of people in New Jersey believed that when medical marijuana was legalized it would be up to a patient and his or her doctor to recommend or not recommend it. This apparently is not the case as the governor seems to want to stick his two cents in to the doctor-patient relationship. If it takes new legislation or a veto override to allow parents like the Joanas to get treatment for their children and if it takes this kind of publicity to bring that to the attention of the public then this is what's happening. We need to write to our legislators (Senator Steve Oroho, Assemblywoman Alison McHose and Assemblyman Parker Space) and urge them to work to pass a bill by a veto-proof margin to broaden availability of medical marijuana and put the decision in the hands of doctors and not politicians.
genesko January 24, 2014 at 05:33 PM
Percocet is serious medicine. both my husband and I have taken it on different occassions and got so sick from the pill, yeah, our original reasons for taking it seemed like nothing in comparison. But whether I am "educated" or not, I think I have asked a legitimate question. Where is the evidence, the body of research, determining that this, like any drug, would have solved thier baby's unique problem? ESPECIALLY at that age. They claimed the baby would not have died if it had been taking medical marijuana. I didn't write the article, but if I were a good reporter, I would have asked that so that people who want to support their cause are not just feeling sorry for them but are genuinely rallying around a body of scientific work that is being ignored. If my kid has, say, diabetes and doesn't get his medicine, he dies. We know this. We can point to studies and numerous examples of exactly that happening to demonstrate that the drug saved that diabetic persons life. There is a research that demostrates exactly how it happens. X + Y = Z. I never heard of the child's disorder, and it would behoove the parents or the author of the article to make an addendum that includes hyperlinks to the reseach regarding the link between curing Dravet Syndrome and medical marijuana. Am I asking for too much?
Lisa Venezia Giannotti January 25, 2014 at 11:57 AM
@genesko, there's a lot of research regarding marijuana and its helpful effects on various seizure disorders. A more prominent story, featured on CNN last August, showcased a child with this baby's exact disease and the difference marijuana has made in her life. http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/
genesko January 26, 2014 at 10:13 AM
thanks. i will check that out. i beleive that any scientific benefits may be significantly blurred by simple legalization. true medicine should not be blurred with "medical excuses" for recreational use. 55 million dead babies later, some still buy into the idea that abortion is only for medical necessity and not convenience and that "it" is just a blob of tissue. slippery slopes abound because there are those hiding among the fold that have become outspoken but have dark and selfish agendas under the guise of compassion.

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