Meet Colin: 2022 Family Advocacy Day Champion

Colin is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Colin and his family will discuss his health journey, Lucile Packard Children's Hospital Stanford’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Colin.

Colin, nicknamed CJ, has a congenital heart defect that doctors first noticed at a 16-week fetal echocardiogram. He was diagnosed with Tetralogy of Fallot, with the absence of the pulmonary valve. 

CJ was in the NICU for two and a half months, where he underwent 3 surgeries, including an open-heart surgery at 9 days old. In the NICU, CJ was also diagnosed with an extremely rare genetic syndrome called WAGR syndrome which affects only one in one million people. 

Once medically stable CJ was sent home with a gastrostomy tube (G-tube) and oxygen/heart rate monitoring. He has had over 10 surgeries and is currently under the care of 14 specialists through Lucile Packard Children’s Hospital Stanford. 

CJ has also been diagnosed with Autism, ADHD, and multiple visual impairments attributing to his legal blindness. 

“Although CJ faces various challenges, he is so resilient and utilizes his strengths to make the most out of everything,” says Diane, CJ’s mother. 

Currently, CJ is awaiting his third open heart surgery. In the meantime, he is a happy 7-year-old who loves to swing and spin to his heart’s content, but most of all he loves to explore the outdoors, whether at a local park or in his own backyard. 

“Having access to various specialists within one institution is what allows the collaborative treatment approach to provide consistency and continuity of care, which is what has helped our son to thrive to this day,” says Diane. “We are so grateful for the quality of care that we receive at Stanford Children’s Health.”

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