Meet Marco: A UCSF Benioff Children's Hospital Champion
When Marco was three months old, he started having seizure-like symptoms where his eyes would spasm and he was behind on developmental milestones. Initially, providers diagnosed him with epilepsy and developmental delay.
champion, is attending Family Advocacy Day.
“Our children's hospital is important to me because they have supported Marco his whole life,” says Norma, Marco’s mother. “Whatever he has needed he has gotten from this hospital. They once saved his life too when he had an epidural hematoma.”
The first time Marco started having to take medication, his parents felt overwhelmed not knowing what his life would look like or what they would need to do to support him. At 18 years old, Marco underwent genetic sequencing, and he was diagnosed with glut-1 deficiency syndrome. “The second diagnosis was such a relief, to know how we could help him,” says Norma.
When Marco was a child, he couldn’t receive the medication he needed because of the cost. “It was never approved by insurance,” says Norma. “After his brain surgery, his neurologist would request several types of therapy like speech and physical, but insurance limited what he received.”
Finally, his glut-1 deficiency wasn’t diagnosed until he was 18 years old because it required DNA sequencing and insurance did not cover it.
Today, with his new diagnosis, he sees a nutritionist and neurologist, and follows a new ketogenic diet which helps him tremendously. In his free time, he loves building Legos.
Family Advocacy Day
Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.
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