Young caregivers 'exist in the shadows,' offer crucial help

Ronan Kotiya leans over his father, fingers wrapped around a plastic tube he’s about to slide from a tracheostomy hole in dad’s neck.

“3, 2, 1, go,” the 11-year-old says as he removes the tube. His mom slips a padded neck brace on her husband and lifts him into a sitting position on their bed.

Ronan’s 9-year-old brother, Keaton, waits nearby, ready to connect their dad, Rupesh Kotiya, to a portable ventilator.

“Ronan, do you want to suction daddy’s mouth and then get ready to go?” Siobhan Pandya asks after her son steers dad’s power wheelchair into the living room of the family’s Plano, Texas, home.

So begins another weekend for the brothers — two Harry Potter fans with mouths full of braces, a knack for building with Legos and some heavy caregiving responsibilities.

Their 46-year-old father has 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 to communicate through a tablet.

As many as 10 million children in the U.S. may provide some form of care at home, according to researcher Melinda Kavanaugh. Some kids are the only caregivers patients have, while others fill in when visiting nurses or other help is not available.

https://www.channel3000.com/i/young-caregivers-exist-in-the-shadows-offer-crucial-help-2/