I had never heard of adrenoleukodystrophy until I saw the movie "Lorenzo's Oil." Commonly referred to as ALD, it is a rare genetic brain disorder that strikes one in 20,000 people, mostly young boys and men.
Sadly, the most devastating form of ALD appears in childhood, generally between the ages of 4 and 10. Normal, healthy kids suddenly begin to regress and, depending on the severity, ALD can lead to a rapid degeneration and a vegetative state.
"This disease can be fatal once you start having symptoms," said Dr. Ami Shah, a pediatric bone marrow specialist at Children's Hospital Los Angeles who treats children stricken with ALD.
Here in Bakersfield, 13-year-old Jeremy Hill Jr. is one of those 20,000. Jeremy and all of his family have gone through so much in the last few years battling his condition that it leaves you in sheer awe.
It began when at around 8 years old, Jeremy started exhibiting some strange behavior. At school his grades began slipping, his handwriting skills began to decline, and while at home Jeremy would forget to carry out simple chores.
His parents, Jeremy Sr. and Debra Hill, took their son to several doctors. They told the parents their son had attention deficit disorder. And for two years, he was treated for it. Valuable time in treating the true condition slipped away and ALD continued to progress.
While on a camping trip to San Luis Obispo, Jeremy coincidentally suffered a seizure and was taken to a local hospital. A neurologist on duty saw Jeremy and suspected ALD. He advised the parents to have Jeremy tested for it at Children's Hospital Central California in Madera. An MRI confirmed what the neurologist suspected. And then the news got worse.
"At first we were told Jeremy had six months to live and there's no nothing," said Debra. Shocked by the analysis, the couple refused to accept that prognosis. Their son would not die without doing everything in their power to save him.
They learned, however, that Jeremy's life might be saved through a bone marrow transplant, which is the only cure for ALD. But they would have to travel to Amplatz Children's Hospital at the University of Minnesota to first see if Jeremy qualified. Scraping together all the money they could and going through the arduous process of dealing with their health insurance to cover Jeremy's treatment, they flew off to Minneapolis for what would be the emotional roller-coaster ride of their life.
Though Jeremy qualified for a bone marrow transplant, doctors in Minnesota said there was only a 25 percent chance he would survive. The family was left with another big decision.
They went for it. Jeremy would undergo 12 days of excruciating chemotherapy. But the transplant failed. What to do now?
A second transplant was done just three months later. It was during this time that the boy came up with an idea.
"He told me in the hospital, 'I don't want any boy to go through this, Mom,'" Debra said.
Being granted a wish to be taken to Disney World by the Make A Wish Foundation, Jeremy came up with another idea. He would give up going to Disney World in exchange for getting the chance to meet President Barack Obama. He wants to persuade the president to pass a law to have all newborns screened for ALD.
"If I meet the president, then I think I could get everybody in the United States to know about it," Jeremy said.
New York just passed such a law in March, and numerous other states are in the process of doing the same. There is an effort underway to persuade lawmakers in California to require ALD screening.
Jeremy's mother was his biggest supporter to make his wish come true. I say "was" because, sadly, the 39-year-old mom died on Mother's Day weekend. Debra was battling her own complicated health issues and was considerably weak. She gave no hint of it, though, when I interviewed the family recently. She needed a heart transplant, was being treated for lupus and then last year was diagnosed with breast cancer. Her immune system was unable to fight off a bacterial infection.
Jeremy's second bone marrow transplant was successful. Though he has lost his sight, the progression of the disease has stopped.
He attends Beardsley Junior High and loves to fish and play baseball, and he likes country music. Johnny Cash is his favorite.
His wish to meet the president did not die with his mother's passing. Jeremy Hill Sr. now carries on his late wife's effort.
"That is now on me. And I will make that happen," he said.
Jose Gaspar is a reporter for "KBAK/KBFX Eyewitness News" and a contributing columnist for The Californian. These are Gaspar's opinions, not necessarily The Californian's. Email him at firstname.lastname@example.org.