Rarely acknowledged, millions of school-aged children in the U.S. provide health care in the home. An AP all-formats trio delivers a tender, immersive look at one family and their young caregivers.
Indianapolis-based health writer Tom Murphy was doing routine source work, talking with an advocacy group for patients with Lou Gehrig’s disease about obstacles in caregiving, when he heard something arresting: Often, it’s children who provide the care.
With that spark, Murphy dug into the research and found that millions of school-aged children across the country are doing heavy-duty caregiving tasks. And he knew that to make a story as compelling as it deserved, he’d need to find a family willing to let journalists see everything they’re going through.
Murphy’s reporting connected him with an academic who was planning a training session in Dallas for kids in exactly such a situation, and he leaned on that source to help find a receptive family. Murphy and New York-based video journalist Shelby Lum worked for weeks to ensure they could fully show what a family goes through every day.
In they end they discovered a family that was not only cooperative but compelling: The Kotiya/Pandya family allowed Murphy, Lum and Dallas photographer Mat Otero to spend parts of four days in their Plano, Texas, home, shadowing their young caregivers, Ronan, 11, and Keaton, 9, and even let the journalists witness a therapy session the boys attended.
Ronan Kotiya, 11, applies suction to clear the mouth of his father, Rupesh Kotiya, at their home in Plano, Texas, April 10, 2022. Ronan, 46, has amyotrophic lateral sclerosis — Lou Gehrig’s disease — a fatal illness that has taken his ability to speak and walk. A ventilator helps him breathe. He uses eye-tracking software on a tablet to say things, blinking to indicate yes or moving his mouth side to side for no.
AP Photo / LM Otero
ALS patient Rupesh Kotiya, center, is moved by his wife Siobhan Pandya, left, and sons Ronan, 11, and Keaton, 9, at the family’s home in Plano, Texas, April 8, 2022.
AP Photo / LM Otero
Keaton Koyita, 9, left, uses suction to clear the mouth of his father, his father, Rupesh, as his brother Ronan watches at their home in Plano, Texas, April 8, 2022. Doctors diagnosed Rupesh with ALS in October 2014, a month before his boys turned 4 and 2. Ronan and Keaton have no memories of their father without the illness.
AP Photo / LM Otero
Ronan Kotiya removes a leg compression sleeve from his father Rupesh, accompanied by his mother, Siobhan Pandya, at their home in Plano, Texas, April 10, 2022.
AP Photo / LM Otero
Ronan Kotiya, right, holds the head of his father Rupesh as his mother, Siobhan Pandya, helps move Rupesh to bed at their home in Plano, Texas, April 8, 2022. Ronan and his 9-year-old brother Keaton started pitching in with their father’s care a few years ago, first by wiping away his tears or propping up his head during car rides. Then they started helping Pandya move their father in and out of bed or onto the toilet.
AP Photo / LM Otero
Ronan Kotiya pats his father Rupesh after helping get him ready for bed at their home in Plano, Texas, April 8, 2022.
AP Photo / LM Otero
Melinda Kavanaugh, center, a University of Wisconsin-Milwaukee social work professor, lets out a laugh while talking with Ronan Kotiya and his brother Keaton during a workshop for young caregivers of ALS-diagnosed family members in Dallas, Texas, April 9, 2022. Kavanaugh thinks as many as 10 million children are involved in caregiving in the U.S. and says youth caregiving will grow as the U.S. population ages and chronic health problems like diabetes become more common. She and other researchers say young caregivers provide crucial help to their families, and they need more support.
AP Photo / LM Otero
Melinda Kavanaugh, right, a University of Wisconsin-Milwaukee social work professor, listens to Ronan Kotiya, 11, as they take a lunch break during a clinic for young caregivers of ALS-diagnosed family members in Dallas, Texas, April 9, 2022.
AP Photo / LM Otero
Ronan Kotiya raises his arms after his toy car won a race with his brother Keaton Kotiya, center, during a workshop for young caregivers of ALS-diagnosed family members in Dallas, Texas, April 9, 2022. The children gathered for a clinic to learn more about caring for people with Lou Gehrig’s disease.
AP Photo / LM Otero
Therapist Sarah Sutton, right, looks on as brothers Ronan Kotiya, foreground, and Keaton, center, laugh during a counseling session in Plano, Texas, April 8, 2022. Caregiving for their father with ALS is a task that children like Ronan and Keaton take seriously and something that their mom hopes will shape them into empathetic, strong young men. But getting there involves a daily struggle to balance being a kid with the resonsibilities of adult caregiving.
AP Photo / LM Otero
Ronan Kotiya holds the tracheostomy tube of his father Rupesh as his mother prepares to clean and change the tube’s dressing at their home in Plano, Texas, April 10, 2022.
AP Photo / LM Otero
Ronan Kotiya holds the ventilator tube of his father Rupesh at their home in Plano, Texas, April 10, 2022.
AP Photo / LM Otero
Ronan Kotiya gets a sleeping bag ready to spend the night with his brother in the living room of their home in Plano, Texas, April 8, 2022. Their mother started letting the boys roll out sleeping bags each weekend during the pandemic as a treat. Now it has now become a weekend ritual as having the boys sleep near their parents’ bedroom makes it easier to summon help for the care of their father.
AP Photo / LM Otero
Keaton Koyita kisses his father Rupesh Kotiya after helping prepare him for bed at their home in Plano, Texas, Friday, April 8, 2022. Keaton’s mother sees her sons’ caregiving as a positive. She hopes Keaton and his older brother Ronan eventually look back and recognize how much they gained by helping someone they love.
AP Photo / LM Otero
With that access, the trio produced a text narrative, video and photos so rich and engaging that readers on AP News spent an average of more than 2 1/2 minutes with the package, a remarkable amount of time. Lum’s full video netted 135,000 views, while two shorter clips for social media pulled in a combined 107,000 views on Twitter.
The package had impact too, including a Texas woman whose husband died from amyotrophic lateral sclerosis three years ago, and who called to see if she could send some of the money he had set aside to go to a family in need of help.
For shining a delicate but bright light on the heart-wrenching reality of grade schoolers having to be as adept with a breathing machine as with Legos, the team of Murphy, Lum and Otero earn AP’s Best of the Week — First Winner.
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