Teen With Muscular Dystrophy Faces Unique Challenge at Stanford

Sylvia Colt-Lacayo, 18, of Oakland has a full-ride but will need personal care aides 18 hours a day

For an East Bay teen, getting a full-ride to Stanford was the easy part. Living on campus will be the real challenge.

The Oakland teenager, Sylvia Colt-Lacayo, is living with a variation of muscular dystrophy that requires expensive round-the-clock care, and that has her studying the economics of health care and how it could threaten her dream.

Colt-Lacayo, 18, said in the beginning, she limited herself to colleges in the East Bay because they were close to home and close to her 24/7 caretaker – her mother. But then came the acceptance letter from Stanford and with it the challenge of living on her own, which comes with a major price-tag that insurance only partly covers.

Colt-Lacayo has a service dog, Nicola, who can do some things for her owner, such as picking up a dropped smartphone. But Colt-Lacayo is going to need a lot more help when she starts her freshman year at Stanford this week.

"I’m really scared to leave," she said. "I’m scared to live on my own, but I’m so excited."

Colt-Lacayo relies on her mother to help her get out of bed, take a shower, use the bathroom, even something as simple as putting her hair in a ponytail.

"The physical strength it takes for me to put my hands behind my head (is limited)," she explained.

Now she has to figure out how she’s going to hire and pay for a team of personal care aides who will be by her side 18 hours a day.

"I can’t drink throughout the day because I can’t pee because someone is not there," she said.

The challenge is finding the money to pay the personal care aides a competitive wage. Colt-Lacayo said MediCal and other funding is helping pay the aides $14 an hour.

"A lot of people that I’ve interviewed, they want $20-$25 an hour," she said.

That extra money is coming out of Colt-Lacayo’s pocket as well as the help from strangers who have donated to her GoFundMe page, which had collected nearly $25,000 of a $50,000 goal by late Monday nght.

"In a perfect world, if I had the money, I would definitely have 24-hour care because it’s honestly a little inhumane not to," Colt-Lacayo said.

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