Boy fights for change in face of rare, debilitating disease

BAKERSFIELD, Calif. (KBAK/KBFX) Jeremy Hill Jr. was given a chance to go to Walt Disney World with the Make-A-Wish Foundation, but he turned it down.

The seventh-grade student at Bakersfield's Beardsley Middle School thought of something else he'd like to do instead - to help others avoid what he's had to endure for years as a result of his affliction with Adrenoleukodystrophy, or ALD for short.

To accomplish that goal, Jeremy wants to meet President Barack Obama and convince him to make a law to have all newborns screened for the devastating disease.

"If I meet the president, then I think I could get everybody in the United States to know about it," said Jeremy at his home.

ALD is an X-linked metabolic disorder characterized by progressive neuralgic deterioration of the cerebral white matter. Brain functions decline, followed by a rapid degeneration that can lead to a vegetative state. Victims suffer seizures, can lose their sight and hearing.

ALD is progressive in nature, so the sooner the treatment begins the better the chances of survival for the victim - thus the drive behind implementing standardized screenings for newborns. Supporters say the cost to the state would be around $1 per child.

"This disease can be fatal once you start having symptoms of it," said Dr. Ami Shah, pediatric bone marrow specialist at Children's Hospital Los Angeles.

In Jeremy's case, he started exhibiting unusual behavior when he was 8.

"He was having a hard time in school, all of a sudden his handwriting instead of improving was declining," said mother Debra Hill.

"We knew there was something going on, we took him to doctors," said the mother.

As time went on, his condition worsened. He would forget to do things, was easily sidetracked and his grades began slipping. Doctors diagnosed Jeremy with ADD, attention-deficit disorder. But it was the wrong diagnosis, allowing his true condition to progress and take a toll on Jeremy.

It was only by coincidence two years later that while on a camping trip to San Luis Obispo, Jeremy suffered a seizure and was taken to a local hospital. A neurologist on duty examined Jeremy and suspected the boy suffered from ALD. He told the family to have Jeremy tested for the genetically rare disease.

The testing was done through an MRI at Children's Hospital Central California in Madera and the results confirmed Jeremy was stricken with ALD.

And, then, more bad news.

"At first, we were told that your child had 6 months to live and we were heartbroken," said Debra Hill.

Then, the family was told that Jeremy might have a chance of being saved by a bone marrow transplant. One of the few specialized treatment centers for ALD was at the University of Minnesota.

Debra started calling the hospital and her insurance to get Jeremy's operation and treatment covered.

"I just went into crazy mode, and I was contacting and calling any number I could get," she said.

But Jeremy's first transplantation, done in November 2010, was a failure. Jeremy underwent 12 days of horrific chemotherapy.

The family had another decision to make. Do they go home to Bakersfield or try a second bone marrow transplant? Just three months later, Jeremy underwent a second transplant, and this time it proved to be successful.

But, in the meantime, Jeremy has lost his vision and any neurological damage done is permanent. As long as his bone marrow transplant holds, Jeremy stands a chance of leading a normal life given the circumstances.

"There's always a small chance, hopefully not for him, but there is always a chance that he would lose his graph for some reason. And if that's the case, then, yes, the disease could progress," said the doctor in Los Angeles.

Jeremy stays active by exercising on a stationary bicycle, loves to fish and plays baseball.

But the family suffered another tragic loss just last week. Jeremy's mother herself had serious medical issues, including a heart condition, breast cancer and was being treated for lupus. She passed away last week. Debra Hill was 39 years old.

Jeremy HIll said he welcomes any help in making his son''s wish a reality. Anyone interested in helping out or donating to the Hill family can call the Congregational Bible Church of Shafter at 746-2187.