Nicole June Reporting
njune@clarksvillenow.com
CLARKSVILLE, Tenn. – A community has rallied together this Christmas to help a young boy who is swiftly losing his hearing.
Zachary Huguley, 11, is described by his mother Michelle as a laid back child who takes life as it comes. He attends public school in Pleasant View and enjoys spending time with his six siblings. However, Zachary’s future is uncertain because he suffers from a rare condition known as Superficial Siderosis.
Zachary’s Superficial Siderosis stems from a tear in the spinal cord, which allows blood to enter the spinal fluid, causing a host of uncomfortable symptoms. He is the youngest documented case of this disorder, which normally does not cause hearing loss until middle age. Zachary’s family was unprepared for such an early downslide in his condition. “My son’s future right now looks very grim. He could end up in a wheelchair or bedridden,” Michelle said.
When Zachary and his twin sister were four years old, they were involved in a head-on collision with a school bus that claimed the lives of their grandparents. Both children were injured, but recovered. The family assumed they would be fine, until one day, when Zachary was nine years old, he began crying out in pain. Doctors discovered he had whiplash, which was decreasing mobility in his back. He was taken to a chiropractor, who has since been able to effectively manage his pain.
The unpleasant discoveries did not end there. Nearly a year and a half ago, doctors discovered the tear in Zachary’s spinal cord, and since then they have been preparing to deal with his Superficial Siderosis diagnosis. Michelle said he receives special help in school, and he seems to be dealing with the news quite well. His siblings are supportive of him, especially his twin sister. “Aubrey is like a little mother hen,” Michelle said. “She just rallies around him, and if the other kids pick on him she takes up for him.”
However, Zachary will soon need more help than his family can give him. Doctors have told Michelle hearing aids may not be helpful, since his hearing loss is progressing at an alarming rate. The family is considering cochlear implants, which can be costly.
Upon receiving this news, Michelle’s best friend, Christie Wall, contacted several people in the community to establish a fundraising event for Zachary. ‘Cakes for Christmas’ will be held Thursday, Dec. 12 at the Smith-Trahern Mansion from 5-8 p.m. to raise money. There will be cakes and local art for sale, a gift basket silent auction, photo shoots from a professional photographer, and more. Zachary’s friends and classmates will create their own art to display and sell.
Though the fundraiser will help Zachary, Michelle wants to do more. She hopes to establish a non-profit to help others with this condition. “I want to not just help my son; I want to get the word out about Superficial Siderosis. I want awareness brought to it for more research, so people who suffer from it can be helped. It’s important because it’s a disease that is so rare,” she said.
For more information about Zachary’s personal struggle, visit the Huguley family’s blog.
To donate a cake, email zackscakesforchristmas@gmail.com.