All the Cilley family wants for Christmas are diapers, feeding tubes and basic medical supplies.
They are simple items that keep 21-year old Eduardo Cilley alive, but that Medicare and Medicaid won’t cover and his family can’t afford.
Eduardo was only 2-years old when he nearly drowned in a swimming pool in his native Argentina. He has been in a coma ever since, and requires constant attention from his father, older brother and especially his 56-year old mother, Amalia.
Since Eduardo needs round-the-clock care, neither his mom nor dad can hold down a regular job. Emilio Cilley works as a handyman whenever he can find a job. Amalia, who has her own health issues, rides her bike to baby-sitting jobs. Brother Hernan, 23, pitches in time and money he earns from a part-time accounting job. He also studies at Miami Dade College.
“We never have extras,” Amalia said.
Making ends meet is more difficult when it comes to paying for Eduardo’s medical supplies. Budget cuts mean that Medicare only pays for a new feeding tube for Eduardo every 90 days, while the tube, which goes under his skin, should be replaced every 30 days, his mother said.
“It’s plastic and it goes bad. It gets black and even smells bad,” she said.
The insurance also doesn’t cover diapers or wipes for bedridden Eduardo, saline inhalation drugs that help him breathe, or even gauzes. The Cilleys have had to dig into their pockets to buy gel pads to put under him to help prevent bedsores, and a machine that clips to Eduardo’s finger to measure his breathing.
“Without it, how do I know?” Amalia asked. “He will turn blue and I’ll have to call rescue.”
They got an inflatable mattress from a local hospital, but his mother wishes she could buy a softer one. She also wishes she could afford a new wheelchair. The headrest for the one she has is broken, and her son’s arms don’t fit on the armrests.
But perhaps her greatest wish lies in a little room in the front of the Cilleys’ modest home on Sunset Drive near South Miami.
She humbly apologizes for the mess as she pulls open a wood sliding door, just off of the cramped living room. Inside is an unmade bed below a window, and some folded laundry scattered around.
One day, Amalia hopes to turn this room into a more comfortable and more maneuverable place to take care of her needy son. It has been a work in progress for a year now. Already, the family has managed to turn a closet into a small doorway that leads straight into a shower.
Right now, Amalia has to carry her son down the hall to the bathroom, where she lays him in an adapted chair to bathe him twice a week. In the new room, once it’s finished, Amalia would be able to wheel her son directly into the shower.
The room gets done slowly, whenever the family has the time and money to work on it.
Amalia especially likes the big window in the room, and that she could easily watch Eduardo from the kitchen or living room. His current bedroom is around a corner, blocked off from view.
With all the time and money the family spends taking care of Eduardo, Amalia’s own medical needs have gone unmet. She doesn’t have heath insurance, so when nodules were found in her thyroids, she had to fly back to Argentina to have surgery. She takes medicine to regulate her metabolism because her faulty thyroid can’t, but skips regular checkups and blood work that she should undergo.
Despite the hardships, a smile isn’t very far from Amalia’s face. She speaks in a gentle, inviting tone — even when complaining about Medicare cuts.
Raquel Linares — a family advocate for CCDH, a nonprofit agency that helps families with members who have disabilities — said she admires Amalia “because of her strength.” CCDH, which has helped the Cilleys in the past, nominated them for Wish Book.
“The thing that never ceases to amaze me is her unwavering faith,” Linares said of Amalia.
In Eduardo’s room and all around the house, family photos hang on the walls, as well as religious mementos. Her Catholicism, Amalia said, “is what sustains me.”
Amalia said she has learned to find the positive side in everything. She feels guilty that her older son spends his only day off doing yardwork around the house. But Amalia takes it as an opportunity to spend time with Hernan while she tends to her garden, which she enjoys.
Family members couldn’t think of a single thing they wanted for themselves for Christmas.
“We’ve learned to do with little,” Amalia said.
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