Niki and Steven Ramirez, parents of four young girls, were honored Saturday afternoon in an event in Levittown, they just weren’t told what it was really about until everyone had already arrived.
In what was supposed to be a ‘Flick and Float’ movie night with Frozen playing in the background, Cheryl Campbell, President of a local non-profit The Christmas Gala helped organize the event featuring swimming, delicious food, a performance by Stepping Stone Dance Studio and special gifts for the one of a kind family. Campbell originally sought out both parents to honor them for their anniversary, and their selflessness in caring for their four daughters.
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Campbell said after meeting Niki and being so impressed with the couple and their dedication to their children and efforts to fight Chiari which all four girls, twins Shayna and Bryanna, Arianna, and Giovanna have been diagnosed with she felt the need to enlist an army of community supports to honor and help the Ramirez’s
Among the army of donors enlisted were Church & Dwight, Giant, Salem Creekside Inn, and the Texas Roadhouse, Campbell said.
All of the donors and supports simply stood up to be counted on, she said.
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Click to watch Stepping Stones Dance Studio perform
Chiari Malformation, according to Conquer Chiari, is a serious neurological disorder in which the bottom part of the brain (the cerebellum) descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine.
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Niki was told by her daughters pediatrician that after one child in the family has been diagnosed with the disease, there is about a 1% chance another child within the family will be effected. Yet the Ramirez family has the pressure of doing it four times over.
Steven said when he walked into the event he felt like something ‘was weird’. “I didn’t know exactly what was going on, but I knew somebody did something,” he said while chuckling. “I am just so glad, this is something more for Niki, she is mostly the one that has to deal with all of this, all the doctors appointments, she needs this support.”
Just as he finished his words, he held Niki as she teared up, gradually kissing her on the forehead.
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For both Niki and Steven, although the pressure of doctors appointments, surgeries, and everyday life can be exhausting, their daughters make it all worthwhile. “The smile on the girls faces makes everything better,” Niki said. “They are the ones dealing with it all, and if they can have a smile, than there is no point in us complaining.”
Conquer Chiari will host its annual ‘Walk Across America’ on September 20 at 12 p.m. at the Falls Township Community Park. The event is organized by Christine Mulherin who lost her daughter Ashtyn in 2010 from Chiari, her other daughter Alyssa also suffers from the disease. Click here for more information.
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