The Bald and Brave
Eleven-year old Austin Giacomo is a fighter and so are his friends, family and some complete strangers who have heard of his illness and subsequent crusade.
In December 2005, Austin was diagnosed with "Histiocytosis," a blood disease similar to cancer and often treated with chemotherapy and radiation. The disease, called “histio” for short, is caused by a surplus of white blood cells called histiocytes and can be life threatening (www.histio.org).
The histio website calls the disease an “orphan” disorder because it is so rare and affects so few people that it does not receive government funding for research. One in 200,000 children are diagnosed with histio each year in the United States. In fact, histio is so rare that on Austin’s recent trip to the emergency room, the doctor on staff said he had never heard of it.
Jennifer Shrader said children under age ten are most often diagnosed with the disease. Histio.org said it is possible, however, for adults to develop the disorder. Shrader joined the fight against histio this year after Austin, her friend’s son, was diagnosed. She explained that Austin develops tumors throughout his body.
In the beginning, Shrader hoped to raise $1,500 to cover Austin’s insurance co-pay for the chemotherapy treatments. This year’s first annual Hair for Histio Day was a success and, even though the event took place November 5, donations are still being received.
“We raised $3,400 from sponsorship for the 'shavees' and I just got $60 more in the mail today,” Shrader said.
Her idea was to hold a sponsorship event similar to Race for the Cure. The difference—participants would be sponsored to shave their heads. On the day of the event, sixteen people got new "dos." Called, Hair for Histio Day, the event was held at Austin’s school, Ida Freeman Elementary.
The best part was that the volunteers were diverse. Shrader said three kids, three women, a father and son, and an entire ditch digging crew were among the participants. While the majority had sponsors, she said at least one man did come in and pay to have his head shaved.
Mandi Giacomo, Austin’s mother, said a few of her son’s classmates shaved their heads as well. Shrader, her father Jack, and Austin’s dad Steven were among the participants.
Half the money raised is being donated to the Histiocytosis Association of America. The other half will go into the Austin Giacomo Medical Relief Fund, which was set up by Austin’s school.
Hair for Histio Day was such a success that Shrader plans to host it the first Sunday in November each year until Austin is in remission, meaning symptom-free for two years.
Austin's mother said the biggest reason for hosting the event was to raise awareness for the extremely rare disease. Besides head shaving, a raffle and concessions were available, which raised an additional $1,100. Shrader said this money would go directly to Austin’s fund because it came from donations made possible by his school. Shrader added that the event continues to raise awareness, as the lack of hair is a great conversation starter.
“If you have hair one day and are bald the next, people tend to ask questions. So, we have an opportunity to inform the public about the disease,” she said.
Today, Austin’s chemotherapy seems to be working. Mandi explained that her son still has a fifty percent chance of developing more tumors on his bones, but the situation looks better for now.
“They don’t know what causes it and there’s no cure,” Mandi said.
Austin’s parents host a blog (an online journal) at www.caringbridge.org/visit/austin and a web page so friends and family can stay updated on his progress. One entry, posted in mid-November, announced that Austin had just begun his fourth round of treatment and, while the tumor in his head seems to be shrinking, a defect in his skull continues to grow.
The site includes a picture of Austin and links to pictures from Hair for Histio Day. Mandi also posts inspirational stories that help her stay positive when times are rough. Visitors to the site can post tributes and stories for Austin and also sign a guest book.
For more information, visit www.histio.org or www.caringbridge.org/visit/austin. Donations can be made to the Austin Giacomo Medical Relief Fund at the First Fidelity Bank located at 1425 S Santa Fe, Suite A in Edmond.