Vivi's Story for Rare Disease Day
Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision makers about rare diseases and their impact on patient’s lives. Speak Now for Kids would like to take this opportunity to honor children with rare diseases and their families. Today, we spoke with Vivi’s mom, Mihaela, to learn about her experience in raising a daughter with a rare disease.
Eight-year-old Vivi is a special child. Not only because her compassionate and loving personality is irresistible, but also because of her extremely rare disease, Niemann-Pick disease type C (NPC).
NPC is a rare genetic disorder where the body can’t metabolize cholesterol and fats, resulting in an excess of these substances in the body. Cholesterol build up can lead to severe liver disease and neurological symptoms. There are around 500 known cases of NPC in the world and, according to medical experts, 100 percent are fatal due to a lack of a cure. This disease changes the question of “WHEN I grow up” to “IF I grow up.”
But, Vivi and her mom, Mihaela, are optimistic. Vivi is currently enrolled in a clinical trial at Lehigh Valley Children’s Hospital in Allentown, PA. in hopes that a new drug might give her a chance to fulfill her big dreams for the future. If successful, this trial might bring a new therapy for NPC patients.
“There are not enough words to describe the amazing team that cares for Vivi,” said Mihaela. “Every other week she’s in the hospital receiving spinal infusions. The doctors, nurses and child life specialists are her friends—her angels really. They play her favorite songs and dance together—there’s always a party in Vivi’s room. The kindness and love she gets at Lehigh Valley Children’s Hospital makes each painful procedure tolerable and less scary.”
NPC doesn’t stop Vivi from enjoying second grade. Her favorite subjects are library and music and she’s doing well at school. She loves to read, dance, play with her many baby dolls, color and just be around the ones she loves—she misses her teacher and classmates when she has to be away for medical reasons.
“Vivi is what you’d call an ‘old soul’,” said Mihaela. “What anyone can learn from Vivi is that life is worth living. Every day should be a celebration and love should be given without asking for anything in return. No matter what, she always has a smile on her face and a hug for a friend who needs it.”
Today, Vivi’s health is stable and her parents are still hoping to find a cure so she can keep being her amazing self. She has been greatly influenced by all the amazing people who selflessly dedicated their time and expertise to give her the best medical care. She would like to be a nurse or a doctor when she grows up, so that she can continue the tradition.
Photo credit: Olaf Starorypinski, Lehigh Valley Children’s Hospital, Allentown, Pennsylvania. To view more photos visit Children’s Hospitals Photo Exhibit.