Like many children living with hydrocephalus, Isabella Ferris is a fighter. This year, she brought her fighting spirit to Congress to advocate for health care services for children
Isabella was just two months old when she developed hydrocephalus after contracting bacterial meningitis. Now, at 12 years old, she’s no stranger to adversity, having endured multiple hospital visits throughout her life and five brain surgeries. She also deals with other conditions, including spastic diplegic cerebral palsy, which affects her ability to walk properly, and strabismus, which affects her eye sight.
She understands exactly how important it is to have access to quality health care, especially for children living with a chronic condition or disabilities. That’s why earlier this year, Isabella and her mom Gloria participated in the Speak Now for Kids Family Advocacy Week, representing UCLA Mattel Children’s Hospital. They met virtually with Members of Congress to discuss Isabella’s health journey, and Isabella shared her story with Representatives Adam Schiff, Ted Lieu, Lucille Roybal-Allard, Judy Chu, Diane Feinstein, as well as a staffer from Rep. Nancy Pelosi’s office.
“Congresswoman Lucille Roybal-Allard thanked Isabella for sharing her story and for being an advocate. She mentioned the difference it makes to connect a face with the issues, and hopes Isabella can go next year in person to Congress so that she can give us a tour of Congress,” Gloria explained
Isabella and her mom also took part in the Hydrocephalus Association’s Hydrocephalus Hill Day in July. Isabella shared the impact living with hydrocephalus has had in her life, explained what a shunt is and treatment options for kids with hydrocephalus. Isabella advocated for more research to find a cure for hydrocephalus and asked members to join the Hydrocephalus Caucus.
Gloria said they want to do their part to raise awareness of the condition so that lawmakers understand the needs of people living with hydrocephalus and their parents and caregivers.
“Hydrocephalus is a lifelong condition that my daughter will have to live with. She is doing okay now but has had to overcome many challenges because of it. As a hydrocephalus family, we are strong, we’re fighters, and we strive to live our best lives. And while we are hopeful for the future, we know that there is much work to be done to better the lives of those living with the condition,” Gloria said.
While Isabella has recovered well from her most recent surgery, her journey with hydrocephalus hasn’t been easy. She has had to miss school at times because of hospitalizations and surgeries.
“The hardest challenge for Isabella when it comes to her hydrocephalus over the last two years has been the need to endure back-to-back surgeries and several weeks in the hospital, on top of dealing with COVID-19 pandemic, all of which impacted her schooling, friendships, and affected her self-esteem and anxiety,” Gloria said.
To help her overcome some of the physical and mental challenges of her condition, Isabella has received a range of therapies, including physical therapy, occupational therapy, equine therapy, and mental health counseling. One of the things that helped her most during her most recent surgeries was being part of CoachArt, a national program that provides free art, and athletic lessons for kids with chronic illnesses and their families. Isabella has participated in a number of classes such as painting, drawing, hip hop dance, cooking, yoga, macramé knitting, acting, ukulele, voice, violin and more, through zoom, that have kept her busy and learning new things.
“Today, Isabella is beautiful, strong and courageous. She is enjoying life, loves to read books, sing, and learn to play instruments such as the piano, ukulele, and violin. She also enjoys swimming, making art, macramé knitting, playing basketball, and cooking. She hopes to be a chef one day and have her own restaurant,” Gloria said.