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CHOC patients meet with legislators for advocacy week

CHOC Children’s patients Zachary and Jennifer, along with their families, recently participated in virtual meetings with legislators as part of ongoing advocacy efforts.

“Each family met virtually with their members of U.S. Congress to discuss the importance of prioritizing children’s healthcare,” says Rachel Rolnicki, CHOC’s director of government affairs. “Especially now, both families felt it was critical to raise awareness about the ongoing and essential care provided by children’s hospitals, such as CHOC.”

More than 50 patient families from children’s hospitals across the country participated in Children’s Hospital Association’s Speak Now for Kids Advocacy Week. The annual effort is intended to raise further awareness about important issues that affect children’s healthcare.

Zachary and Jennifer shared their personal stories of receiving care at a children’s hospital, in order to help educate lawmakers about the essential role of children’s hospitals and the Medicaid program during an uncertain and challenging economic time brought about by the COVID-19 pandemic.

One in three children in the U.S. receive health coverage and benefits under Medicaid. Many patients and their families depend on timely access to doctors trained to care especially for them and their unique needs. The Children’s Hospital Graduate Medical Education (CHGME) program is a vital source of funds that help train future physicians. Children’s hospitals in the CHGME program receive half the funding that adult hospitals receive for similar training programs. One element of these virtual meetings was a request that Congress increase funding for CHGME.

“Supporting children’s hospitals is a short- and long-term investment in children’s health we’re asking Congress to make,” Rachel says. “Particularly now, in this public health emergency, millions of families — like Jennifer’s and Zachary’s — are counting on children’s hospitals to provide medical care and behavioral health services to help their children reach their full health potential. Together, we can ensure our nation’s children lead the most healthy and productive lives possible.”

Learn more about Zachary:

Zachary was diagnosed with spina bifida in utero at 16 weeks. At just 7 years old, Zachary has had over 20 surgeries at multiple hospitals and has seen providers from more than a dozen specialties including urology, neurology, neurosurgery, pulmonology, ophthalmology, orthopedics, gastroenterology, pediatric surgery, radiology and plastic surgery.

Zachary and his family
Zachary and his family

He continues to see neurosurgeons and urologists at CHOC Children’s Hospital for his healthcare needs. In 2019, Zachary needed a full VP shunt replacement. A ventriculoperitoneal (VP) shunt is a device that relieves pressure on the brain caused by fluid buildup. Using leading-edge technology and equipment, CHOC clinicians were able to alleviate the pressure on Zachary’s brain by replacing his shunt with a new programmable one. They also replaced an older value with a newer one that will help prevent shunt failure in the future.

Zachary and his family participate in a virtual meeting with legislators
Zachary and his family participate in a virtual meeting with legislators from CHOC’s Seacrest Studios

Currently, Zachary is doing well and thriving academically and socially. He likes to hang out with his family, his twin sister, Lily, and his service dog, Tiki. He enjoys playing video games with his friends and loves adaptive sled hockey and basketball. Zachary wants to be a radiologist one day and has an interest in the human body and bones.

Learn more about Jennifer:

When Jennifer was 10 years old, her life was fairly typical. She liked school, hanging out with her friends and cheerleading. One day she noticed the fingers on her left hand were becoming misshapen. The family doctor did not seem concerned and told her to simply exercise them.

After a few months, Jennifer was experiencing weakness in her foot and right hand. She was referred to the CHOC Children’s Neuroscience Institute where she underwent testing to determine what was happening.

Jennifer began to have seizures and started taking anti-seizure medication. She also started seeing clinicians for physical and occupational therapy, as well as psychology. Doctors diagnosed her with Rasmussen syndrome — a rare, progressive, chronic encephalitis or swelling of the brain. Jennifer had brain surgery in December 2016.

“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 and her family at her quinceañera at CHOC
Jennifer and her family at her quinceañera at CHOC

Jennifer continues to recover from surgery and is improving. She likes arts and crafts, painting, coloring, going shopping and playing with her dog.

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