Community Corner

Bono's Shout Out Means LOTS to Encino Man

Encino's Eric Pastor, who suffers from Late-Onset Tay-Sachs (LOTS), is inspired in Anaheim when U2 frontman sings "Moment of Surrender."

For years, doctors could not piece together the medical puzzle of Eric Pastor’s symptoms. As a young boy growing up in Encino, he was uncoordinated and his speech was slurred. He was never able to ride a bike or roller skate with the rest of the neighborhood children. Pastor was always the slowest runner in his physical education class, and the last person picked on any sports team during school.

Despite his physical and speech impairments, Pastor was a good student academically. He graduated from Birmingham High and then the University of Arizona with a degree in management information systems. He even studied abroad in Israel. But his handicaps remained a mystery.

“I always knew I was kind of different because of my speech, my clumsiness, difficulty athletically,” Pastor, now 36, said. “I always knew there was something up with me, but I was fine mentally."

Find out what's happening in Encino-Tarzanawith free, real-time updates from Patch.

It wasn’t until 1996 that Pastor and his family learned the cause of his problems:  Late-Onset Tay-Sachs disease. After his mother suffered a miscarriage, she had Pastor take a blood test when he was 22. He was finally diagnosed.

The test showed Pastor had inherited two copies of a mutated gene, one from each parent. Though both of Pastor’s parents are carriers of the recessive gene, they themselves do not have the disease, and did not pass it on to their daughter, Melanie.  

Find out what's happening in Encino-Tarzanawith free, real-time updates from Patch.

Tay-Sachs is a neurological disease that typically affects babies of Ashkenazi Jewish descent, and kills children between the ages of 3 and 5. The fatal genetic disorder, which is caused by the absence of a vital enzyme called hexosaminidase-A or Hex-A, results in progressive destruction of the nervous system. Without the enzyme, a fatty substance accumulates in the cells, mostly in the brain.

Pastor suffers from a non-fatal, adult form of the disease, called Late Onset Tay-Sachs (LOTS). Those with LOTS can live a long life, but, like Pastor, become progressively disabled. To date, there is no cure.

His legs have grown weaker, which has made daily tasks more difficult. In the last year, he’s fallen several times, resulting in stitches, bruises, scrapes, a broken toe and a sprained ankle.

“I think people don’t realize that normal activities, like going to the movies, where there are always steps, or getting up from a chair, is a task and it’s harder for me to do,” Pastor said. “I don’t walk straight, my balance is off. Crossing the street, stepping off the curbs, climbing onto the bus, getting into a vehicle, handwriting, opening drawers—it’s just daily activities that are hard for me.”

Though his symptoms are worsening, Pastor is still independent enough to live alone in an apartment in Encino, which is within five miles of his parents’ home. And despite the cards he’s been dealt, he tries to lead a normal life.

He went back to school and is currently a student at West Valley Occupation Center, studying graphic design. He takes public transportation because he can’t drive. He exercises and plays golf with his dad when he’s feeling up to it.

“I try to keep myself in shape,” he said. “I go to the pool at CSUN doing aqua therapy to keep my legs and balance in check, but basically there’s no cure or treatment that I can take.”

Every three to four months, Pastor sees his neurologist for an examination. He also uses a Pulsed Electromagnetic Field Therapy machine three days a week, and says he feels more energetic, sleeps better, has reduced pain and has even lost 10 pounds.

Pastor has participated in experimental treatments, and hosted community fundraisers with his family. His mother, Bonnie Pastor, established the Late Onset Tay-Sachs Research and Education Foundation, which is dedicated to finding and funding a cure for the disease.

Pastor says his main mission is to help raise awareness of the disease. The illness is so rare, he said, that most adults with LOTS have been misdiagnosed for years.

“A lot of people don’t know they have this. They think they have another ailment like multiple sclerosis, muscular dystrophy or Parkinson’s because they don’t know about this disease,” Pastor said. “There’s no awareness.”

Although Pastor is constantly reminded of his relentless disease, he has retained a social life and a positive attitude. He credits a lot of that to Melanie Pastor, his 39-year-old sister, who helps drive him to parties and social events.

She was the one who introduced him to her friend Laurie Green, the founder of Good Girls Give. Much like the Make a Wish Foundation, Good Girls Give is a nonprofit organization based in Studio City that fulfills a special dream for individuals with disabilities.

To be eligible for a “Dream Day” through Good Girls Give, Pastor had to create a video that explained his condition and his ultimate dream. In a nearly seven-minute YouTube video (see above), Pastor candidly explains his struggle with Late Onset Tay-Sachs. His family and friends sing his praises.

“It was easier to tease him as a little kid, but now I just try to do everything that I can to make everything as wonderful as I can for him,” Melanie says in the video. “He’s been a fighter his whole life, he’s had an amazing attitude and I feel like it’s been tough with the cards he’s been dealt.”

An avid sports and music fan, Pastor then explains in the video that his ultimate dream is to meet his music idol, Bono. 

“Ever since we were young, Eric had no idea how to dress, he didn’t know what kind of food to order, but he did know music and he’s got great taste in music,” Pastor’s best friend Alan Reed said in the video. “And I couldn’t think of a more fitting, apropos time, than for him to meet his favorite musician of all time: Bono.”

Good Girls Give decided to grant a Dream Day to Pastor, and Green started planning a surprise, once-in-a-lifetime U2 concert experience at Angel Stadium of Anaheim on June 18.

“I was totally shocked when a limo pulled up and I saw my friends and my sister,” said Pastor, who was initially told that Good Girls Give couldn’t get tickets to the show and his Dream Day wasn’t going to be a reality. 

The group received a Music Express limo ride to the venue, concert tickets, souvenirs, dinner from Original Tommy's Hamburgers and one more special surprise.

At the Saturday night performance at Angel Stadium on U2’s 360 Tour, Bono dedicated the song “Moment of Surrender” to E Street Band saxophonist Clarence Clemons, who recently died of a stroke. The lights dimmed, as the crowd paid homage to the late musician.

At that moment, Pastor was inspired. Bono’s words resonated with him, and encouraged Pastor to continue fighting his own medical battle—one he won’t surrender.

 

This article has been edited for accuracy.

To learn more about Good Girls Give, visit goodgirlsgive.org. For more information about the Late Onset Tay-Sachs Research and Education Foundation, visit lateonsettay-sachs.org.


Get more local news delivered straight to your inbox. Sign up for free Patch newsletters and alerts.

We’ve removed the ability to reply as we work to make improvements. Learn more here

More from Encino-Tarzana