"Me being a first-time mom, it was a very traumatizing experience," Phinisee said. "The journey in the beginning was very rocky and rough."
Phinisee, who was a student at Temple University when she gave birth, had to grow up very fast. Assiah was just 1 year old when she had her first transplant. The effort was unsuccessful.
"You need to be equipped with the appropriate knowledge," she explained. "You cannot be afraid to get a second opinion."
But Phinisee realized she is not alone. Many families dealing with pediatric transplantation suffer similar traumas when they are forced to abandon their lives to fight for their child's health.
As a result, Phinisee founded Assiah's Liver Fund to raises awareness about organ donation and transplantation, as well as to train parents on how to advocate for their chronically ill child.
She has traveled the country speaking at medical conferences and other huge events, including the Essence Festival.
"It makes you feel good to know that you are putting information — medical information that can be helpful to others — in the community," Phinisee said.
She has made the complicated world of organ transplantation and donation accessible to children. She wrote a children's book, "I Am a Flower Pot Made for a Plant," which educates children about the process of organ donation.
The organization has also educated the community on a healthy donor lifestyle, developing lemonade-themed products for sale.
"We are teaching children to be conscious, aware and empathetic," she said. "These workshops reinforce the concept that it's OK to be different."
Phinisee also makes a number of other lemony products, like handmade soaps and bath bombs. The money goes toward Assiah's Liver Fund to produce more events and educational opportunities.
Today, Assiah is 10 years old, and while she still has some tough days, she's doing OK. But Phinisee said the battle is far from over for Assiah’s Liver Fund.
"I want Assiah's Liver Fund to become a resource for families, and I want it to be an ally for the organ procurement industry itself," she said. "Hopefully we will get more resources and provide our own money toward research."
Phinisee said her experience changed the game for her. She hopes by sharing, it does the same for others as well.
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