Emergency services takes care of its own
Benefit to help paramedic's son
by JILL SCHMELZER Ken-Ton Editor

Jon Cinelli and his son Jon Jon, 6, attended a Buffalo Sabres game this past year. Jon Jon was recently diagnosed with intrinsic pontillar glioma.

Twin City Paramedic Jon Cinelli received the worst possible news this past December when doctors diagnosed his 6-year-old son, Jon Jon, with intrinsic pontillar glioma.

Jon Jon began experiencing debilitating headaches and double vision this past fall, but it wasn't until his left eye fixated toward his nose that serious red flags went up.

Jon Jon's parents, Jon and Anne Cinelli of the Town of Tonawanda, took him to see an eye doctor at The Fichte Eye Center. The pediatric optometrist in turn referred the child to Dr. Aleksander Rovner, according to the Web site www. jonjonsjourney. com.

Most believed Jon Jon had a lazy eye; at least that's what the CT Scan revealed, according to a blog written by Jon Cinelli. However, Rovner didn't feel confident that this was the case, so he ordered Jon Jon to have complete magnetic resonance imaging of his head and neck. The test revealed a tumor that is wrapped inside the brainstem, making it inoperable.

The brainstem is the main nerve center of the human body and is responsible for all of the vegetative functions, including breathing, body temperature and heart rate.

Because the tumor is in the neck, there isn't much room for it to grow, so it pushes on nerves and causes certain parts of the body to malfunction and eventually shut down.

"We were fortunate that it began with his eye and nowhere else, and it still has not progressed anywhere or affected anything else to this point," Jon Cinelli said.

When fellow Twin City paramedics heard of Jon Jon's condition they rallied other emergency personnel, including police officers and firefighters, to raise funds for the boy's medical treatments.

The Cinellis' best option is to visit the Burzynski Clinic in Houston, Texas, which has a long history of treating cancer and, in particular, Jon Jon's type of tumor.

Most health insurances do not cover the cost of treatment at the clinic, which could total up to $100,000, not including flights, a rental car and at least one month of lodging. The clinic runs as an outpatient facility, and the first month of treatment is conducted in Houston.

The fundraising committee is spearheaded by Mike Baumgartner and Brett Rider.

"When we found out, it was like we needed to do something for this kid," said a Kenmore police officer.

The committee is selling blue bracelets for $5, and a fundraiser will be held from 1 to 8 p.m. Saturday, March 29 at the Sheridan Park Fire Hall, 738 Sheridan Drive in the Town of Tonawanda.

Tickets cost $20 and will include beverages, live music, a Chinese auction and celebrity appearances from sports veterans, such as Thurman Thomas of the Buffalo Bills.

"Jon Jon steals your heart away," was a sentiment expressed by many involved in the fundraising efforts.

For more information or tickets, call the town Police Department at 876-5300 or the Kenmore Fire Department at 875-3274.

More information can also be obtained at the Web site www.jon jonsjourney.com or by e-mailing mbaumgartner@tonawanda. ny.us, brider@tonawanda. ny.us or skirsch452@yahoo. com.