Family seeks cure for rare genetic disease

With the thousands of videos that have been posted on the popular Web site YouTube, there is nothing about the video of the young man kicking soccer balls toward a large white panel to garner immediate attention.

But keep watching.

The soccer player is 20-year-old Steven Angotti of Seffner, diagnosed with a rare genetic disease called von Hippel Lindau disease. It's a particularly aggressive disease that causes tumors to form in the brain, spinal cord, retinas, kidneys, pancreas and adrenal glands.

There is no cure. Angotti, who graduated fourth in his Armwood High School class of 2007 and played varsity soccer, has undergone repeated surgeries to remove the tumors. As soon as one tumor is removed, another appears.

Thus, Angotti's You Tube video.

In the video, he discusses the unusual disease as he kicks soccer balls loaded with paint toward the white panel. By the end of the video, the paint spots on the panel have formed the word "Cure."

In a campaign with the von Hippel Lindau Family Alliance, the video was used to raise money to help find a cure for the disease and possibly win Angotti a trip to California for a VHL Family Alliance conference. During April, each time someone watched the video and clicked on the VHL Family Alliance box next to it, Angotti received points.

Angotti said he knows research and the possibility of a cure is his only hope for a long, healthy life. And, even if it's too late for him, he said he's still committed to raising funds to give hope to future sufferers.

He and his mother, Beverly Angotti, are planning their second fundraising pancake breakfast.

"Without a doubt, we are very passionate about supporting medical research to help these VHL warriors with effective medications, better screenings and less invasive surgery techniques," Beverly Angotti said. "Without a doubt, we will do our part to support the search for a cure."

The event will take place from 8 to 11 a.m. Saturday in the fellowship hall at the Angottis' church, First United Methodist Church of Seffner, 1310 S. Kingsway Road, Seffner. Donations are $5 for adults and $4 for children. Breakfasts will include pancakes, eggs, sausage and a choice of coffee, orange juice or milk. All proceeds will go to the VHL Family Alliance's cancer research fund.

"We are inviting other VHL warriors from Florida to the breakfast," Beverly Angotti said. "We plan on these families being our guests at the breakfast, as they have already paid the price. Anyone who would like to sponsor a family can get in touch with me."

Angotti is also seeking donations of gifts and gift cards for drawings.

Steven Angotti was a typical teen - healthy, active, focused on school, soccer and friends - until he began experiencing headaches and dizziness in 2005.

A CAT scan and electrocardiogram were normal, but an MRI of his brain detected two white spots. He had tumors on his cerebellum and underwent six hours of surgery to remove them.

Since then, he has been living a day at a time as he pursues a degree in political science at Florida State University in Tallahassee between periods of severe illness and hospital stays.

In February, he had a follow-up appointment at the National Institutes of Health in Bethesda, Md., where researchers have been studying the disease. Doctors reported growth in his brain stem tumor, and he now has six tumors in his brain and two in his spine.

When she receives such devastating news, Beverly Angotti seeks the comfort of her computer. She's a faithful blogger and shares her hopes and fears with the world at stevens journey.blogspot.com with diary entries and an occasional poem.

A fundraising account has been established for Steven Angotti at the Web site firstgiving.com, and contributions also can be sent to the Angotti family at P.O. Box 6702, Seffner, FL 33583.

For information, contact Beverly Angotti at (813) 685-2374.

IF LOVE COULD CURE

If love could cure,

There would be no more tumors,

Or brain surgeries,

Or endless nights in ICU,

Or oddly mutated genes.

If love could cure,

This sweet boy would be disease free.

Poem on Beverly

Angotti's Web site