 "Photo: Jazelle Hunt")
(NNPA) - "Son, do you have pain?" Jairus Hunt asked over his shoulder. He was flying down the New Jersey Turnpike, jetting to Philadelphia, where he and his son would find relief. It was the wee hours of the morning, and he had come straight from an overtime shift.There was no answer from his son in the backseat.
"Brian?" he called, trying to keep his bleary eyes on the road and check on his son at the same time. "Yes," Brian murmured. "Yes you have pain?" Jairus said, this time to the rear view mirror.
"Yes," Brian responded. It was his leg, shooting jolts of pain through his body with every bump in the road. Jairus tried to reach one arm back to massage his son's thigh and relieve some of the pressure. They needed to get to the Children's Hospital of Philadelphia, to get stronger pain medication. Then they could both get some sleep.
Brian is my brother. Jairus is my father. They made the drive to Philadelphia for the first time about six years ago, when there were so many theories about my brother's slow and subtle deterioration.
First, doctors said it was Sjgren's (pronounced SHOW-grins), a disease that attacks the body's moisture-producing glands. Next it was vasculitis, weakening his blood vessels. And then it was juvenile rheumatoid arthritis attacking his joints and muscle tissue. Rheumatoid arthritis can be fatal if it turns the immune system on its body's own organs. One doctor thought Brian might even have lupus.
My father, never one to invest in anything at face value, started looking for answers on his own. That's how he found the hospital in Philadelphia, also known as CHOP, which Child Magazine has rated No. 1 in the country for the past five years. It's where Brian goes for treatment to this day. It's where he found out just how sick he was.
At 11 years old, my younger brother was diagnosed with mixed connective tissue disorder - a group of different diseases, all rolled into one. There's no cure. There's no known cause. In most cases, it seems a virus triggers the immune system - but the immune system stays in hyper-drive after the virus has been killed and begins attacking healthy tissues.
OUR NEW REALITY
When we were little, Brian was unstoppable. He was the MVP of every sports team. Before I could stand still on my in-line skates, he had already skipped training wheels and dominated a two wheeler, zooming down concrete stairs and popping wheelies in the middle of the street. At school he made straight "A"s look easy. Brian was dynamic.
He's still dynamic. He still gets the grades and conquers the gadgets. He just can't pop wheelies in his wheelchair.
"When I first started getting sick, it wasn't bad . It felt like just a regular sickness I would bounce back from," Brian said. He's 18 now, and comfortable on his wheels. "I couldn't walk, I was always in pain. I was in a wheelchair. I went to sleep one night and woke up and my whole life was different."
When the disorder came, it took his strength first. We had to wake him up much earlier in the morning, because it was hard for him to muster the energy to transition from sleep to activity. Then, he couldn't carry a book bag anymore, or shuffle back and forth between classes all day. His joints went. His knees would no longer support him for more than 10 minutes. Finally, there was a wheelchair and home school.
"I was in so much pain. I was so inflamed, you couldn't even touch me, it hurt so bad," he said. "It was like I was burning." 'In pain all the time'
The pain meds started stacking up. Vicodin. Tylenol with codeine. Now there's hydromorphone. With the push of a button (which he did every 10 minutes) the device administered another shot of hydromorphone straight into his veins.
"I remember one night, telling my dad that I understood why they used pain in torture," Brian said. "Because you will crack. Something about your mind will change - either you'll go insane, or you'll fight it so hard your mind will shut down and go numb."
His weight dropped. His growth stunted. Then he was on steroids for a while, which brought his weight back up, and allowed him to walk across the stage and graduate at the middle school he last attended.
DAD'S NEW REALITY
The moment he got Brian's first diagnosis, my father hit the ground running. "The first thing I did was educate myself," he said. "I'd spend hours and hours on the Internet, then get up and go straight to work. I wouldn't even sleep sometimes."
My dad became Brian's advocate, and gave the doctors case studies and information they hadn't seen yet. When they tried to put my brother on anti-depressants, fearing that his emotional and mental state would suffer, my father put his foot down and became Brian's anti-drug, constantly praying with, and encouraging him. He was Brian's chauffer, shuttling him back and forth to the hospital at all hours of the day and night. And when Brian couldn't sleep, my father was his nurse, massaging him for hours until the pain subsided enough to let Brian close his eyes.
" .The goal was to save Brian," my father said. "I had to do it for my son; he was counting on me, not his doctors. His brothers and sisters were counting on me. It's not up to the doctors to decide and to take care of Brian, it's up to me."
Brian saw it too. "Whenever I called him from work, no matter what it was, even if I just needed some water from the store, even if it was something I didn't necessarily need, but just wanted, he came to me. I felt love in those things. I saw him sacrifice for me."
In August 2006 my father was laid off. Brian's medication for one month was $1,500, even after insurance. "I was worried about our livelihood, of course, but Jehovah God answers prayers," my father said. "I've seen a remarkable difference."
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