Helping A Keiki Who Needs It
Friday - October 27, 2010
The day after Christmas last year, Kathy and Jose Carranza learned their newborn daughter Bailey has spinal muscular atrophy (SMA) Type 1, a neuromuscular disease characterized by degeneration of motor neurons, resulting in progressive muscular atrophy and weakness.
Bailey will never be able to lift her head and sit on her own, nor will she crawl or walk.
“In the beginning it was hard,” says Kathy. “I was a dance major, so everything is movement to me. I see movement and I feel it in my body.
“Also, as a parent, you think, ‘oh, my daughter is going to do hula or dance ballet.’ But now, it’s, ‘my daughter will never sit or stand,’ never mind the other stuff. That was really hard.”
Bailey turned 1 this week (Oct. 25), and Kathy says she no longer looks at her baby’s disabilities, but rather focuses on the things she can do.
“She’s very expressive with her eyes, and that overshadows everything,” she explains. “The joy she shows with her eyes, and she can vocalize a little over her trach (tracheotomy tube).”
Bailey, like many 1-year-olds, enjoys watching cartoons and interacting with people. She has spent most of her first year indoors, but her family, which includes 3-year-old brother Hayden, hopes to change that soon.
The constant monitoring, however, makes it difficult to accommodate Bailey, a caregiver and her medical equipment in the family car. Bailey also is outgrowing her car seat and will need a reclining wheelchair. And they will soon need a handicap ramp van, which Kathy says costs about $50,000 plus shipping fees, because modifications to the vehicle are made on the Mainland.
That’s why the family has planned a fundraiser, Benefit 4 Bailey, with proceeds going toward the purchase of a 2011 Toyota
Sienna handicap ramp van. Fortunately, Horizon Lines has offered to help by greatly reducing the shipping cost.
The event takes place Oct. 30 from 5 to 10 p.m. at Pipeline Cafe (805 Pohukaina St.) and will feature entertainment by Island Storm, Darren Benitez, MZ Royalty Erica Aloisio and H Trey. Actor Kalai Miller will serve as emcee.
General admission is $25, free for children age 5 and under. Tickets are available by phone at 1-877-71-GROOV, at the Pipeline Cafe box office or online at www.pipelinecafehawaii.com or www.groovetickets.com.
Monetary donations also can be made to The Friends of Bailey Lehua Ui Fund at any Bank of Hawaii location.
For more information, call 371-2144 or log on to Bailey Lehua Ui Carranza’s Facebook page.
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