A typical after-school scene unfolded in April Chavez’s apartment one afternoon earlier this month: Her two older boys, Xavier, 12, and Cesar, 11, tumbled through the door, kicked off their shoes and fixed themselves snacks. Their younger brother, Marius, wheeled himself around on the living room’s slick linoleum floor in his special “corner chair,” a wooden seat with a tabletop and wheels on the bottom.
Marius, 10, has a severe form of tuberous sclerosis, a genetic disorder that causes tubers (small, nonmalignant, tumor-like structures) to grow in the brain, heart and kidneys. Marius is developmentally disabled and nonverbal, and he has trouble walking without help.
“There are lots of challenges,” Chavez said. The single mother, relaxed, was clearly used to talking about Marius. “He has seizures every day. There are lots of hospital visits and trips to specialists and doctors. Just trying to get out of the house is hard, because Marius needs special equipment, like his wheelchair, which doesn’t fit in most cars.”
Last year, The New Mexican’s Empty Stocking Fund purchased a special “floating bed” for Marius. The bed is round and suspended from the ceiling, hanging from evenly placed ropes. It takes up most of the space in Chavez’s bedroom and swings gently, like a hammock. Several pillows, including one bearing the image of Tigger from Winnie the Pooh, are scattered around the mattress perimeter.
Chavez sleeps in the bed with Marius (she hasn’t spent a night away from him since he was born) so she can keep him safe at night. If he moves or tries to get up, the motion of the bed wakes Chavez, and also helps soothe Marius back to sleep.
“We’d been trying to get a bed for years, because Marius got too big for the playpen,” Chavez said. “I never would have been able to afford a bed like this in my wildest dreams. Medicaid will only pay for hospital beds, and even that I would have had a hard time getting.” Chavez said the family lives on a fixed income, from Marius’ Supplemental Security Income and monthly child support checks from her oldest son’s father. “We have to stretch about $900 a month and it’s really hard,” she said.
Chavez turned to the Empty Stocking Fund last year in hopes of getting help with a down payment on a single-level house that would be more accommodating to Marius’ needs (their apartment has stairs). But because Chavez didn’t know she had to get a mortgage through the Section 8 subsidized housing program, she was unable to get paperwork and financing together in time. The Empty Stocking Fund purchased the second item on her holiday wish list, the floating bed. The bed makes day-to-day life easier for the family.
Marius has 10 to 15 seizures every day, a decrease from the hundreds he used to have on a daily basis. “Marius has the mental capacity of an infant to a 3- or 4-year-old,” Chavez said. “On his worst days, he’s completely helpless. On good days, he feeds himself, walks, plays and uses his communication boards like [the kind designed] for kids with autism.”
In addition to the corner chair and Marius’ playroom, which is dominated by a huge purple bean bag donated by the Make A Wish Foundation, the bed is a central part of Marius’ world, a safe haven. As Chavez spoke, he played with cause-and-effect toys — mostly push-button devices that lit up or made noises — and looked to her often. Marius’ life expectancy is unclear, but it’s possible he will live to adulthood.
“From 1 year and 5 months [when he was diagnosed] to 3 years old, the doctors and I fought to keep him alive,” Chavez said. Removal of the tubers is not possible; a doctor once told Chavez it would be like trying to remove poppy seeds from a poppy seed cake.
These days, Marius is doing relatively well, with the support from his family, medical staff and educators. He attends school at Agua Fría Elementary, in a classroom for medically fragile students. A teacher and nurse from Agua Fría, Cathy Barnett, also works with Marius after school, through her second job as a nurse for a private in-home health care company.
“We like it when Marius is focused, responding, smiling and problem-solving for himself,” Barnett said. “He’s figured out a lot, like how to get a toy off the floor using his feet, how to use a fork, take a cap off a bottle. When he gets hurt, he wants April. She’s done a great job with all three.”
Marius’ brothers hung on his chair and ruffled his hair while their mother spoke. “They love Marius,” Chavez said of her two older boys. “They pitch in and help take care of him, change his diapers, get him dressed. But it’s hard to spread my attention.”
“Plus your time and effort,” Barnett said.
“I protect him,” Cesar said of Marius. Cesar is outgoing and has a flair for the dramatic. He clutched his forehead and declared, “Without him, I’d be miserable.”
Xavier, who is more reserved, added, “It wouldn’t feel right without Marius.”
How to donate
Contributions to the Empty Stocking Fund should be made payable to The New Mexican’s Empty Stocking Fund and mailed to the Santa Fe Community Foundation, P.O. Box 1827, Santa Fe, NM 87504-1827. To make a donation online, visit www.santafecf.org and click on the “Give Now” link, and select Empty Stocking Fund from the drop-down menu.
Contact Adele Oliveira at 986-3091 or firstname.lastname@example.org.