Local woman finds solace from rare condition in holiday program for children
December 26, 2011
A smile spread across Amanda Reed's face Tuesday morning as she packaged her young customer's gifts.
"Your mom's going to like that," Reed said to a Ridgeview Elementary School student as she gently wrapped the child's purchases.
Reed, 33, is a stay-at-home mom, wife and volunteer at Sunset Elementary School, where her son, Trayton, 9, is a third-grader.
On this day, she's a volunteer for Penguin Patch, a program at Ridgeview and Sunset elementary schools this year that offers affordable gifts children can buy for their families.
A few minutes earlier, Reed knelt next to Jadence Vasquez, a Ridgeview Elementary first-grader, who was puzzling over a gift for her brother.
"What do you think he'd like?" Reed asked gently as she showed Vasquez foam balls and other items a boy might appreciate.
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With her broad smile and bright red Santa Claus hat, Reed seemed far removed from pain and uncertainty.
But, there's another reality in Reed's life that has evaded easy diagnosis and surrendered few answers.
The pain started about a year and a half ago — a sharp pain that defied explanation.
It's like "someone sticking a knife into your bone and twisting it," Reed said.
She underwent multiple tests and saw several local physicians, but the pain's source remained a mystery.
Then, a few months ago, the answer came.
Reed learned she has condensing osteitis of the clavicle, a rare disorder that, although benign, can cause excruciating pain.
The American Journal of Roentgenology defines the condition as "marked by bony sclerosis at the sternal end of the clavicle," according to the publication's website.
Put in simpler terms, the bone swells up, Reed said, although the pain can fluctuate.
"It's constantly there," she said. "When (the pain) is quiet, it's more of a nuisance."
There's no known treatment for the disorder, she said, and physical therapy is out of the question.
"The more you do, the angrier (the pain) gets," she said.
She hopes to eventually find insight into the disease that physicians and her own inquiries have been unable to provide.
"It's one of those things — what do you do about it, you know?" her husband Jack Reed said.
Amanda Reed's research on the Internet uncovered a case in Germany where a woman suffering from the disorder had the bone removed, he said, and the procedure seems to have worked.
"But, I mean, heck, that's Germany," he said. "That might as well be Mars, as far as medicine's concerned, because you're not going to find anybody in the United States that (does) experimental stuff like that."
Yet the couple chooses not to dwell on these things.
The condition doesn't dictate their lives, nor does it diminish their appreciation for what they have together.
"We've got each other and the kids and we'll be fine," Jack Reed said. "Nothing else really matters."
"You guys are great shoppers," Amanda Reed said Tuesday morning as she helped other Ridgeview Elementary students finish their holiday shopping.
She beamed again, a smile spreading across her face.
Jack Reed was with her in the school library and was one of several volunteers who manned the small store.
Getting Penguin Patch to these students was part of Amanda Reed's handiwork; she helped start the program three years ago at Ridgeview Elementary when her son attended school there and when she was School Accountability Committee president.
She patiently guided the children through the multitude of gifts scattered across several tables Tuesday in the Ridgeview library. Students slowly examined ring holders for grandmothers, tiny tape measurers for fathers and coffee mugs for mothers.
The gifts here are inexpensive — the highest priced item costs $9 — so they're affordable for young children, Amanda Reed said.
A company ships the merchandise to participating schools, she explained, at no cost to the schools.
It's not a fundraiser, she said. It's just a way to give children a chance to buy a little something for a family member.
"It's just to see those kids be able to give to their families, especially when a lot of people (are) in hard economic times. I mean, it's just rough out there, you know?" she said.
"For them to be so excited that they can give to somebody else is just awesome to see."
The Penguin Patch program, along with her volunteer work at Sunset Elementary, takes her mind off the pain, she said.
"Here you go, sweetie," she said Tuesday as she handed a child a small parcel of carefully packaged gifts. "You have a merry Christmas."
Her voice belied no hesitance, her face no sign of pain — just friendliness and joy.