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Holiday Hopes: Young man wants test for disease that killed his father

Terrell Jefferson, 18, left, sits next to his half brother Caleb Smith, 19, in front of Caleb’s home in Sulphur Springs. Their father died eight months ago of a rare disease, which Caleb now is living with. Terrell, being helped by the group Starting Right, Now, wants to know if he will get the illness.

WILLIE J. ALLEN JR. | Times

Terrell Jefferson, 18, left, sits next to his half brother Caleb Smith, 19, in front of Caleb’s home in Sulphur Springs. Their father died eight months ago of a rare disease, which Caleb now is living with. Terrell, being helped by the group Starting Right, Now, wants to know if he will get the illness.

TAMPA

For two weeks since Terrell Jefferson got his learner's permit, he has been driving the Tampa streets in his mentor's orange Hummer. • But the 18-year-old Chamberlain High School senior hasn't gotten many other breaks in life. • While he was growing up, both of his parents served time in jail. He was 2 when state officials first took him from his mother. His great-grandmother, Mary Williams, now 90, took him in. As he grew older, his mother tried to give him a proper home but she could never make it work. • Terrell isn't sure where she is now.

In middle school, at Christ Aid Academy in Titusville, another family took him in. They had a 3-year-old daughter named Danielle, and Terrell bonded with her like a sister. In 2007, she died of a brain tumor. Terrell remembers the nurses at the hospital who cared for her. This was a job for him.

"The medical field needs people who have a heart," he said.

Then there was his father.

About a year ago, Terrell found him in Titusville through his half brother. His father was sick with a rare disease called Von Hippel-Lindau, which causes benign and malignant tumors. For six months, Terrell cared for him, helping him walk, get into and out of bed, to the bathroom and to doctors' appointments.

Andrea Brown was 39 and was being treated at Moffitt Cancer Center.

On a Wednesday eight months ago, Terrell and his half brother, Caleb Smith, who is a month older than he is, and their father, Brown, moved from Titusville to Tampa.

The following Wednesday, their father died.

At first, Terrell felt an overwhelming panic. There were so many things to do and Terrell and Caleb had few resources to do any of them. As he moved into his father's bedroom and straightened up his things, he found a clear binder a doctor had given his dad. The letters VHL were printed on the outside, short for the genetic disease that killed his father.

Terrell looked only at the first page.

"I try not to think about it," he said.

Instead, he focused on getting into high school. It wasn't easy, without a car or a parent. He had been an honor roll student in Titusville as well as a natural athlete and a certified soccer referee. Throughout his high school years, he said, he had made only one C. But when he tried to enroll at Chamberlain High School, he was steered toward the GED program.

Terrell didn't think that would be his best path to college.

When he sought help to get into school, a social worker referred him to Starting Right, Now, a nonprofit organization that works through Hillsborough County schools to eliminate homelessness among high school students.

Director Vicki Sokolik said Terrell is the kind of person who, given a chance, will return to give back.

She set him up with an apartment last month, and then a mentor. She got him a cellphone and is working on a job. He'd love to work as a pediatric nurse one day.

He often visits his brothers who live nearby. Terrell's father had eight children. Caleb is one of two who know they have the disease that killed their father. Caleb had eight tumors on his brain and had to learn to walk again after surgery. Another brother, Shandale, who is 17, also has the disease.

Terrell tries not to think about it. He focuses on school and getting into college. He helps his brothers.

He tries not to worry when the left side of his body freezes for a few seconds, just like his father said used to happen to him.

Terrell simply wants to know if he inherited the disease.

"It would take a lot off my chest," he said.

Elisabeth Parker can be reached at eparker@tampabay.com or (813) 226-3431.

Holiday Hopes

This is the first story in a four-part series profiling people in Hillsborough County who have a need or a wish this holiday season. On the fifth week, we will update readers on the status of wishes granted.

The wish

Terrell Jefferson, 18, wants to find out if he has Von Hippel-Lindau, the disease that killed his father. A comprehensive lab test to screen for the disease costs $675, plus doctor's fees, according to a spokeswoman at Moffitt Cancer Center.

To help, email Starting Right, Now at info@start

ingrightnow.org; or go to startingrightnow.org, click on "Contact" and then on "Donate" at the bottom. Checks can be made payable to "Starting Right, Now" and sent to 16057 Tampa Palms Blvd., Tampa, FL 33647.

Holiday Hopes: Young man wants test for disease that killed his father 11/24/12 [Last modified: Saturday, November 24, 2012 3:31am]
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