Traveling quilt raising awareness of cancer-like disease
LEETONIA- Tiffany Aitken remembers reading about a little boy in Lisbon battling a rare cancer-like disease. Her mother, Tammy Maynard, remembers the story, too.
Neither Tiffany nor her husband Chris, both nurses, had heard of the disease, a form of histiocytic disorder.
The family would become very acquainted with the disease, however, when a month later their 2-month-old daughter, Gia, was diagnosed with the disease.
“It was just a shock to everyone, we’d never even heard of it before,” Tiffany said.
At 2 months old, Gia was diagnosed with Langerhans cell histiocytosis (LCH), the most common of the histiocytic disorders. The cells are a type of white blood cell that help the body fight infection. LCH is the build up of Langerhans cells which cause tumors and damage organs, acting similar to leukemias and lymphomas.
Gia has spent 16 months on chemotherapy and just last week completed her 40th and final round pending further body scans. She will spend her entire life battling the disease, which affects one or two children per million and has a high rate of recurrence.
Tiffany, a 1999 graduate of Leetonia High School, and Chris are using Gia’s battle with the disease to increase awareness of LCH, raise funds for the search for a cure and hopefully inspire other families struggling through adversity.
“It’s hard to go through, but it’s better when you know it has a purpose, that you’re helping people,” Tiffany said.
The Aitkens have been included on the Histiocytosis Quilt for a Cure, a four-panel, ever-growing traveling quilt featuring squares in honor and memory of victims worldwide, designed by Donnie Ward, a Kansas woman whose granddaughter battled the disease.
The quilt is available for viewing at the Leetonia Community Public Library, where patrons can learn about LCH and drop off monetary donations to help fund LCH research.
According to Tiffany, the quilt is a tribute to those who have fought with LCH, win or lose.
“All these people, young and adults, they’ve been through long, hard battles and deserve to be recognized,” she said. “For their loved ones, it’s a chance to see that their ‘angels’ are still inspirational.”
Despite the rarity of the disease, the quilt shows that there is a strong support system for people touched by adversity, especially in today’s world of social media. The Aitkens found Ward on Facebook and correspond with others across the globe.
Of course, there is still the traditional support from family- the Aitkens said their parents, Tammy and James Maynard and William and Clare Aitken, have been invaluable during the past 16 months, caring for Gia and her two sisters.
But in nowadays, people can reach out from any place, and that is why community members should take advantage of the opportunity to see how LCH has brought people together instead of tearing them apart.
“There’s such a large support system,” Chris said. “There’s people all over the world who’ve been touched [by LCH] and we’ve been able to help each other.”
Gia’s story can be found at Gia’s Army on Facebook, as can Histiocytosis Quilt for a Cure.