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Tuesday, May 3, 2016

Family attempting to raise money for boy suffering from rare disease

Sunday, March 15, 2009

Brody Starkey isn't your typical 7-year-old.

Since he was a baby, Brody's mother, Loni Head, knew something was different.

Right before he turned 7, Loni and others learned Brody was not the same as others his age.

"When he was 2, (doctors) ran tests and thought he had cerebral palsy," Loni said. "We've always known something was wrong."

However, right before that birthday, doctors diagnosed Brody with Neurodegeneration with Brain Iron Accumulation (NBIA).

"It is very rare," Loni said. "The doctors told me it's one in a million and Brody is that one in a million."

Loni said doctors conducted an MRI scan on Brody and discovered iron spots on his brain. They then conducted a blood test, revealing NBIA.

According to the National Institute of Neurological Disorders and Stroke (http://www.ninds.nih.gov/disorders/nbia/niba.htm), NBIA is a "rare, inherited, neurological movement disorder characterized by progressive dengeneration of the nervous system."

According to the website, symptoms generally develop during childhood and may include slow writhing, distorting muscle contractions of limbs, face or trunk, choreoathetosis (involuntary jerky muscle movements), muscle rigidity (uncontrolled tightness of muscles), spasticity (muscle spasms), ataxia (inability to coordinate movements), confusion, disorientation, seizures, stupor and dementia.

"He used to be able to do everything," Loni said. "Now, he can't walk, can't eat and can't talk. He lays down all the time.

"In the past couple of months, his condition has worsened. It continually gets worse. On his good days, he can sit up. Before, he would have only a few bad days."

The website states there is no cure for the disease.

However, surgery is an option and those with NBIA can live longer than expected if surgery is successful.

Brody has seven physicians he visits in Indianapolis on a regular basis.

"Pretty much all he understands when he goes to the doctor is you're getting help," Loni said.

He meets with one of them, Dr. Anup Patel, at least once a month. Dr. Patel, coincidentally, has been working with the family looking for a surgeon who would work with Brody.

However, efforts proved fruitless looking for a surgeon in America. Loni said she was told doctors in the United States would not perform the surgery on a child, but would perform surgery on teens.

However, she said Dr. Patel recently informed the family he had found a surgeon in Europe that does perform the surgery.

"He's amazing," Loni said of the doctor. "You don't find many doctors who would do that."

With successful surgery, Loni said it's possible for those with NBIA to get back 80 percent of their mobility.

Surgery -- deep brain stimulation -- involves planting a medical device in a person's brain -- essentially a brain pacemaker -- that would send electrical impulses to specific parts of the brain.

Now, the family is asking for help.

According to Loni, family members are in the process of setting up an account in Brody's name at a local bank for donations to pay for a trip overseas for the surgery.

In addition, she said the family has looked into other possible ways for fundraisers for a proposed overseas trip.

Until the funds are raised, Brody and family will continue to make monthly trips to Indianapolis to pay visits to Riley

"He's pretty much the same as he was before," Loni said. "It doesn't matter how much pain he's in, he's still got a smile on his face."

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God be with you and your family and the community as well!

-- Posted by fitch30437 on Sun, Mar 15, 2009, at 7:39 PM

you are in my thoughts & prayers

-- Posted by kd323 on Sun, Mar 15, 2009, at 9:39 PM

My dad has deep brain stimulators for Parkinson's. It has been a miracle for him. I hope the fund-raising is successful and Brody gets the medical care he needs.

-- Posted by exbrazilrez on Mon, Mar 16, 2009, at 5:52 AM

I know brody for a few years. her is a great kid to be around with. he is also fun to play with.

-- Posted by mrtedebear69 on Mon, Mar 16, 2009, at 5:21 PM

This beautiful young boy is my nephew. He has a Mom who has devoted more to him than I thought could ever be possible by a human. Prayers are very appreciated by his family. We all hope this ccommunity and surrounding areas will be able to pull together and help Brody in his time of need.

-- Posted by LittleSisSam on Tue, Mar 17, 2009, at 3:39 PM

good luck best of wishes

-- Posted by tylera1989 on Tue, Mar 24, 2009, at 6:20 PM

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