Mom finds ‘sunshine’ in caring for daughter with cerebral palsy

Photography by Melanie Bell

Nominated by Clinics Can Help

Every morning, Evelyn Santana changes diapers, checks the breathing tube and gently strokes the cheek of her 20-year-old daughter Priscilla Diaz.

Diagnosed with cerebral palsy and Rett’s Syndrome as an infant, Diaz is unable to talk, walk or feed herself. When not on one of her constant doctor appointments, the dark-haired young woman spends her days under 24-hour care from nurses and her mother in the pink bedroom in their three-bedroom home off Georgia Avenue.

“I wake up every morning and sing ‘You Are My Sunshine’ and ‘Happy Birthday’ to her. Being disabled does not mean my daughter will not have a life,” said Evelyn.

Evelyn, 54, is raising Priscilla alone. Evelyn has been on disability since 1996 following an injury where she herniated her discs. She and Priscilla together collect about $2,100 monthly.

Priscilla began having seizures when she was about 1 year old. She has never spoken, and it’s unlikely she ever will be able to live on her own. She can only move her right side.

“I hate it when people look at her and say ‘Boo hoo, poor child.’ I know she is happy,” says Evelyn, placing a doll in her daughter’s arm as she sleeps.

The doll, like Priscilla, has a speaking valve in her throat.

“I made it. I took one of Priscilla’s old breathing valves. I sewed it to the doll’s throat,” said Evelyn.

Evelyn sees signs that her daughter is learning.

Priscilla brightens up when her grandmother walks in the room. Monthly visits from Mike the bug exterminator bring a grin. Priscilla’s collection of sunglasses is on the coffee table. “Blue’s Clues” on the video never fails to make her smile.

“If you stand in front of the screen while ‘Blue’s Clues’ is on, look out. She’ll yell to get you to move,” said Evelyn.

As Priscilla gets older, coping with her disability is getting tougher for Evelyn.

Priscilla weighs 77 pounds. Lifting Priscilla to turn her over to prevent bedsores or lift her into her wheelchair gets more difficult.

“I help Priscilla move. I can’t do anything for a couple of days,” said Evelyn, holding her lower back.

A new vehicle, electronic generator and wheelchair ramps would make helping Priscilla much easier for Evelyn.
The family vehicle now is a red 2003 Ford Windstar with about 122,000 miles. It needs tires and body work.

Evelyn and a nurse now must manually lower the ramps in the van. They then push Priscilla in her 50-pound wheelchair up and down the ramp. Then they shut the ramps manually.

A new van would do that electronically.

“It’s so hard to wheel her in and out of the van,” said Evelyn.

New metal wheelchair ramps installed at the front and side doors of the house would increase safety. The current ramps are old and unstable.

An electronic generator would allow Evelyn and Priscilla to stay home when a storm is approaching or strikes. Losing electricity would mean a shutdown to Priscilla’s breathing ventilator and gastric pump.

“We spent two days in the hospital during Hurricane Dorian. It was terrible. If we had a generator, we could stay home,” said Evelyn.

Watching her daughter sleep on a recent afternoon, Evelyn said many acquaintances warned her of the sacrifices she would make by raising Priscilla. When she and her husband were divorced, many told her she should consider placing Priscilla in an institution.

“Priscilla needs me. She will have the most fulfilling life I can give her,” said Evelyn.

Evelyn’s wish:

Evelyn Santana’s daughter Priscilla was diagnosed with cerebral palsy and Rett’s Syndrome as an infant. Priscilla, who smiles when her mother strokes her cheek, is unable to talk, walk or feed herself. She spends her days under 24-hour care in the pink bedroom in their three-bedroom home off Georgia Avenue. Evelyn needs new wheelchair ramps to get Priscilla in and out of her home. A new vehicle is needed to get Priscilla to and from doctor appointments. A generator would allow Priscilla and her mother to stay home during storms. They now must go to a hospital or shelter.

Nominating agency: Clinics Can Help Inc.

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