Meet Rafa: 2019 Family Advocacy Day Child Champion

Rafa is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Rafa will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Meet Rafa! Despite being only 3 years old, Rafa loves to spend time reading—in both English and Spanish—and has an incredible memory. Some of his favorite things to do are visiting the science museum and going to the playground with his family.

Rafa was born with chronic kidney disease and severe bladder issues, which meant undergoing several surgeries, five weeks in the neonatal intensive care unit and nightly dialysis just to survive. When he was only a year old, he received a kidney transplant from his dad—this gift was instrumental in making him the thriving, happy youngster he is today. Rafa still needs a feeding tube to eat, but he is working towards gaining more independence!

Thanks to the incredible team at Boston Children’s Hospital, Rafa is able to make many new memories with his parents and little sister. The hospital team was there for Rafa’s family before he was born and continue to be there every step of the way. Medicaid has also been instrumental in filling the gaps Rafa’s family has experienced in their insurance coverage, helping Rafa get the care he needs to continue being the fighter he is!

Join us in welcoming Rafa to 2019 Family Advocacy Day.

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