Family raising funds for boy's surgery

Friday, March 27, 2009

Loni Head recently received some good news.

For months, she believed she was going to have to raise quite a bit of money for a trip to Europe in order for her son, Brody Starkey, to receive surgery for Neurodengeneration with Brain Iron Accumulation (NBIA).

However, a recent phone call from one of her son's doctors has changed the perspective.

She recently informed The Brazil Times the doctor contacted the family to tell them he had found a doctor who would perform the surgery here in the states.

Brody's doctor, according to his mother, found a doctor in Madison, Wis., who will perform surgery on children with NBIA.

The 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.

Until Loni received the information from Brody's physician, it was believed that no doctors in the United States would perform the surgery on children.

Despite the good news, the family still needs help raising funds for a possible trip.

And, according to Loni, several events are in the planning stages.

Loni told The Brazil Times several benefit concerts are being looked into. She said it was possible that former Clay County resident Henry Lee Summer may come to Brazil to perform.

In addition, she said District 45 State Representative Bruce Borders might possibly perform a benefit as his alter ego, Elvis, and contact has been made to country artist Taylor Swift for a possible benefit.

Loni added a Bowl-A-Thon is tentatively scheduled for May 2, at Brazilian Lanes.

She said cost to compete in the event is $25 per person, $13 of which would go to a fund for Brody.

She added cost to sponsor a team is set at $125.

She also said an open house has been set to take place sometime in April or May at the Eagles Lodge, which would include raffles, gift baskets and an auction as well as live entertainment.

"We've got a lot of stuff going on," she said.

The family has set up an account in Brody's name at Riddell National Bank as well and family will be selling candy bars with Brody's name on them in the Jasonville area.

Right before his seventh birthday, Brody was diagnosed with NBIA. According to the National Institute of Neurological Disorders and Stroke, NBIA is a "rare, inherited, neurological movement disorder characterized by progressive degeneration of the nervous system."

According to the organization's 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.

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  • If there is anything I can do Please contact me

    920)358-6229 Iam from Greencastle class 81 my name is Paula Evens and there is a few more of us up here praying and thinking of you.

    -- Posted by paula4 on Mon, Mar 30, 2009, at 1:20 PM
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