BAKERSFIELD, CA - A local boy living with a rare disease is trying to enlist President Obama's help to spot the disease at birth. He hopes mandatory newborn genetic testing can save hundreds of children's lives.
14-year-old Jeremy Hill, Jr. has a hard time learning new things and remembering his ABCs, but he knows what adrenoleukodystrophy is. He's been living with it since birth, but his family didn't know it until four years ago.
In 2009, the Hills began noticing their son was having trouble doing simple things like tying his shoe and writing his name. While camping in 2010, Jeremy Hill, Jr. had a seizure that left him unconscious for hours. After undergoing several tests at the nearest hospital, the Hills learned their son was living with adrenoleukodystrophy.
"If we would've known, we could've stopped this disease and prevented Jeremy from being the way he is right now," Jeremy Hill, Sr. said.
Adrenoleukodystrophy or ALD is a genetic disease that affects about one in 20,000 people. It affects the nervous system and adrenal glands. Symptoms are often confused for signs of ADD, but ALD can cause paralysis, blindness, and even death.
"Some people find it and it'll be too late and they have to die sometimes. I just luckily survived," Jeremy Hill, Jr. said.
After two bone marrow transplants, Jeremy Jr. has a new shot at life. And with the Make-A-Wish Foundation, he hopes to meet with President Obama and make it mandatory for all newborns to get tested for ALD.
"Because it just is a blood test and try to make a new law to think to where they would have to get tested of the disease," Jeremy Jr. said.
California AD 1559 would add ALD to the list of diseases for which Californian newborns are tested. But, Jeremy is thinking bigger and using his one wish to impact hundreds around the nation.
"My son can go anywhere in the world that he wants, just about spoil himself, do whatever he wants and instead he wants to save little boys' lives."
The Hills are headed to Washington, D.C., to meet with the president. They hope it will be sometime this month, but it depends on the president's schedule.
So far, New York and Connecticut have started screening newborns for ALD.
14-year-old Jeremy Hill, Jr. has a hard time learning new things and remembering his ABCs, but he knows what adrenoleukodystrophy is. He's been living with it since birth, but his family didn't know it until four years ago.
In 2009, the Hills began noticing their son was having trouble doing simple things like tying his shoe and writing his name. While camping in 2010, Jeremy Hill, Jr. had a seizure that left him unconscious for hours. After undergoing several tests at the nearest hospital, the Hills learned their son was living with adrenoleukodystrophy.
"If we would've known, we could've stopped this disease and prevented Jeremy from being the way he is right now," Jeremy Hill, Sr. said.
Adrenoleukodystrophy or ALD is a genetic disease that affects about one in 20,000 people. It affects the nervous system and adrenal glands. Symptoms are often confused for signs of ADD, but ALD can cause paralysis, blindness, and even death.
"Some people find it and it'll be too late and they have to die sometimes. I just luckily survived," Jeremy Hill, Jr. said.
After two bone marrow transplants, Jeremy Jr. has a new shot at life. And with the Make-A-Wish Foundation, he hopes to meet with President Obama and make it mandatory for all newborns to get tested for ALD.
"Because it just is a blood test and try to make a new law to think to where they would have to get tested of the disease," Jeremy Jr. said.
California AD 1559 would add ALD to the list of diseases for which Californian newborns are tested. But, Jeremy is thinking bigger and using his one wish to impact hundreds around the nation.
"My son can go anywhere in the world that he wants, just about spoil himself, do whatever he wants and instead he wants to save little boys' lives."
The Hills are headed to Washington, D.C., to meet with the president. They hope it will be sometime this month, but it depends on the president's schedule.
So far, New York and Connecticut have started screening newborns for ALD.