“Victoria suffers from this rare & deadly neurodegenerative disease”
At 3 years old, Victoria contracted a stomach virus that contributed to her developing an enlarged spleen. A specialist ran a series of DNA tests on a sample of her blood to analyze it for the presence of gene mutations that ultimately led to Victoria’s diagnosis. She suffers from Niemann Pick Type C (NPC), a rare and deadly neurodegenerative disease. An inherited cholesterol metabolism disorder, NPC leads to neurological issues that are typically fatal. It is known as the equivalent of “Childhood Alzheimer’s.” Symptoms include deterioration of memory and balance, lung and liver failure, delayed motor development, low muscle tone, and seizures. NPC is devastating, and as an afflicted child ages, they will likely have problems with gait, dystonia, spasticity, speech, swallowing, severe cognitive impairment, and early-onset dementia.
With no known cures or treatment plans available, Victoria’s parents enrolled her in a clinical trial at the National Institute of Health. The first phase of the trial lasted a year. Every two weeks, Victoria underwent a clinical procedure where doctors punctured her liver to insert a liquid medication that would travel to her spine and brain. The goal of the medicine was to eradicate the negative deposits of excess cholesterol and lipids that accumulate in her brain, liver, and spleen as a result of the NPC. Afterward, she was unable to walk or talk for a full week. The drug therapy proved effective, and Victoria has since moved on to the second phase of the trial. Now, after the biweekly procedures are complete, although Victoria is able to walk immediately, she is still unable to talk for about a day. Also, her once perfect hearing has declined so much that she now requires hearing aids. Victoria’s participation in the clinical trial is ongoing.
Victoria is Romanian and bilingual. Now five, she speaks and writes in both English and Romanian. An old soul with a gentle spirit, Victoria is an extrovert. Given the chance, she will talk your ear off. The “chatterbox” is deeply compassionate, treating the family cat like a sibling. A born caretaker, Victoria dreams of becoming a doctor and loves playing the role of “mommy” to her plethora of baby dolls. She adores days spent at the beach, playing in the sand, laying in the sunshine, and swimming in the ocean.
Kids Wish Network is hard at work planning a once-in-a-lifetime experience for Victoria; make sure to stay up to date by checking back soon for all of the magical details of her enchanting wish!