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

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.