Meet Jennifer: 2020 Family Advocacy Week Champion
Jennifer is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Jennifer and her family will share information about her health journey, CHOC Children’s role in providing Jennifer with necessary health care services, and why the public and our elected officials must invest in the future of kids like Jennifer.
Jennifer was a typical ten-year-old. She liked school, hanging out with her friends and cheerleading. One day she noticed the fingers on her left hand were becoming deformed. The family doctor did not seem concerned and told her to simply exercise them.
After a few months, Jennifer began experiencing foot and right-hand weakness. She was referred to the CHOC Children’s Neuroscience Institute where she underwent testing to determine what was occurring.
Jennifer began to have seizures and started taking anti-seizure medication. She also started seeing specialists for physical and occupational therapy, as well as psychology. Doctors diagnosed her with Rasmussen syndrome — a rare, progressive, chronic encephalitis (swelling of the brain). Jennifer had brain surgery in December 2019.
“The hospital staff at CHOC took excellent care of my daughter,” says Jennifer’s mom Josepha. “They have always motivated her and made her feel special. They even organized a special 15th birthday celebration, a quinceañera, in the hospital days before her brain surgery. As parents, we are deeply grateful for all the support they have always given our family.”
Jennifer continues to recover from surgery and is improving. She likes arts and crafts, painting, coloring, going shopping and playing with her dog.