Accessing Pediatric Subspecialty Care in California
Children and youth with special health care needs (CYSHCN) often require care by multiple pediatric subspecialists. Due to a shortage of these physicians, families can…
Category: CYSHCN Stories
Seven New Grants Awarded to Propel Systems and Policy Change for Children and Youth with Special Health Care Needs
The Lucile Packard Foundation for Children’s Health is thrilled to announce the newest cohort of researchers and organizations receiving grants through its Program for Children…
COVID-19 Public Health Emergency (PHE) Unwinding Resources
Now a year into the process, the COVID-19 Public Health Emergency (PHE) Unwinding, through which many policies put in place during the pandemic ended or…
“My boys have already made an impact.”
Meet Stephen and Edward from Alameda County, CA. Stephen and Edward live with Hunter syndrome. There are 200-300 children, virtually all boys, with Hunter syndrome…
“As a mom, you’re always thinking, what if something happens to me?”
Meet Derek from Shingletown, CA. Derek lives with spina bifida, hydrocephalus, a neurogenic bowel and bladder, and bi-lateral clubbed feet. Wendy Longwell and her family…
“All of the pieces a child needs should operate together.”
Meet Savitri from Dunlap, CA. Savitri lives with cerebral palsy, developmental delays, seizures, and spastic quadriplegia. At 6:15 a.m., Beverly Baker starts getting her daughter,…
“I wish all of his doctors were in one building.”
Meet Evan, who lives at Beale Air Force Base, CA. Evan lives with neurofibromatosis, including physical and speech delays. “It hasn’t been easy for me…
“It’s a puzzle. It’s a juggle. And no one’s going to figure it out for you.”
Meet Isabella from San Marcos, CA. Isabella lives with Down syndrome, developmental delays, and a heart defect. April Villafaña and her daughter, Isabella, at their…
“It’s a ticking time bomb. We have to live our daily lives knowing that things could go haywire at any time.”
Meet Daniel from Ontario, CA. Daniel lives with neurofibromatosis. At 5:30 a.m., Manuel Iniguez wakes up Daniel, the youngest of his four children. “How do…
“At the end of the day, we are a normal family.”
Meet Celeste and Alexia from Marysville, CA. Celeste and Alexia live with 22q deletion syndrome. Celeste and Alexia Madrigal were each born without one kidney,…