Family stays hopeful, seeks answers about 6-year-old's illness
10/06/2012 12:00 AM
10/07/2012 12:21 PM
Marissa Velasquez loves singer Katy Perry's music. The 6-year-old sings along and dances as best she can in her wheelchair.
If her parents play Perry's songs as Marissa emerges from the medically induced comas that halt her seizures from the rare genetic disorder she suffers, she even tries to dance her way back to full consciousness.
"She has the nurses and doctors dancing with her to Katy Perry," said her mother, Jamie Velasquez.
"Katy Perry is her favorite thing on the planet," said Micheal Velasquez, her father.
The Velasquezes expected Marissa – a girly girl who also has an affinity for princesses in general and Cinderella in particular – to be finishing up her first month of the first grade now. They expected her to be getting ready for the family's favorite holiday, Halloween, as well as a princess party for her seventh birthday in December.
Instead, Marissa receives hospice care services at home, and her parents, both 33, have learned something that parents should never have to learn: Hospice isn't a service that helps only the elderly.
The family, who live in North Natomas, signed up with Yolo Hospice on Sept. 7.
"It was our 10th anniversary," Jamie said.
She works as a dental assistant. Her husband, whom she met in the ninth grade at Foothill High School, is a warehouse manager whose job is being downsized. He'll be unemployed at the end of the month, he said.
"Somebody has to be here with Marissa all the time," he said. "It'll kick me in the ego, but I'll stay at home, and Jamie will go back to work. We'll find a way to make ends meet. As long as we have health insurance, that's OK."
Marissa's illness – Alpers' disease – involves the progressive degeneration of the brain, heart and liver caused by a genetic defect in cells' mitochondrial structure. Epilepsy medications can help reduce the seizures, but there is no cure, no timetable and no real hope.
She was diagnosed in August, a month after the first of her three medically induced comas to keep her seizures at bay.
"At first, we thought it was epilepsy," said her father.
It's only been in the past several weeks that her ability to walk has diminished to the point that she uses a wheelchair, and only in the past week has her hospice nurse increased her visits to three a week from two.
"We thought the doctors would be able to give us all the answers," said Jamie, "but they don't know."
To help with medical expenses and set a little money aside for the holiday season, Jamie Velasquez makes hair ribbons – pretty bows to clip in little girls' hair – while she's sitting in front of the TV after putting Marissa and her 4-year-old sister, Alex, to bed.
"We're trying to make the holidays this year as nice as possible for Marissa," she said.
She sells the bows online through Etsy.com and plans to participate in the Peace Lutheran Church craft fair from 9 a.m. to 5 p.m. today at 924 San Juan Road in Sacramento.
The family also benefited from a fundraiser earlier this week at Pete's Restaurant and Brewhouse in Natomas. Marissa and Alex both dressed up as Rapunzel for the occasion.
"We're surrounded at this location by schools and families and homes," said Heather Juneau, Pete's marketing manager. "We really want to give back to the community as best we can."
The outpouring left Jamie and Micheal Velasquez both honored and humbled. When Micheal tried to tip the server who helped them all night, he said, the waiter refused to take the money.
"I had people walking up and handing me checks," Jamie Velasquez said. "Oh, my gosh."
"There was so much love," said her husband. "It was overwhelming in a good way."
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