"Voice For My Child” Raising awareness about traumatic brain injuries

Staff Writer


More than 20 years ago, resident Craig Sears was in a motorcycle accident, leaving him with a traumatic brain injury (TBI). Since then, Sears says he has faced many challenges, and he wants to make sure that future generations of children with TBI never have to go through what he did.

"I was arrested, hospitalized and treated with no respect due to my brain injury, and because I have a traumatic brain injury, there is no health assistance for me -- is that really the American way?" said Sears. "The brain injury community is very small -- nobody wants to talk about it. But I'm being a voice for everyone."

Sears is now an advocate for the first-ever National Pediatric Acquired Brain Injury (PABI) plan, a proposed system of care that would be universally accessible for all children, young adults and their families, regardless of where they live in the nation. The plan was drafted in 2009 by "Voice for my Child" -- a group of parents who have children with pediatric acquired brain injuries -- and The Sarah Jane Brain Foundation.

The Sarah Jane Brain Foundation, based in New York City, was created by the father of Sarah Jane -- a girl who has had a pediatric acquired brain injury since she was five days old -- and elected officials.

According to the Sarah Jane Brain Project's website, causes of PABI include both TBI -- which includes falls, motor vehicle incidents, sports concussions, blast injuries from war, violence, assault, child abuse, shaken baby syndrome, gunshot wounds and bicycle accidents -- and non-traumatic brain injuries, such as brain tumors, meningitis, strokes, high fevers, or lack of oxygen due to near-drowning incidents or difficulty breathing after birth, poisoning and substance abuse.

Sears said there are a lot of misconceptions about traumatic brain injuries, and most people don't realize there isn't a lot of help out there for children with TBI.

"A traumatic brain injury is not a mental illness," said Sears. "Injuries require care, care that we all need, care that this plan can provide."

On Oct. 13, 2009, House bill 198 was introduced by U.S. Rep. G.K. Butterfield, D-N.C., along with 47 original co-sponsors.

The bill states that Congress should recognize PABI is the leading cause of death and disability in the United States for children and young adults up to 25 years of age. It also endorses the PABI plan as the method to help prevent future PABI cases and treat all children and young adults suffering from PABI, while also supporting their families and encouraging all federal, state and local governments to implement the PABI plan.

Ken Willis, communications director for Congressman Butterfield, said the issue is important because it affects thousands of people in the country.

"One thing that members of Congress can do is highlight an important issue like this one and introduce it as a resolution," said Willis.

Since March, the bill has received more than 100 bi-partisan co-sponsors from 40 different states -- enough sponsors for the measure to be put before the House's U.S Energy and Commerce Committee.

According to Willis, the plan has been held up recently by re-elected Congressman Frank Pallone, D- N.J., who heads the Energy and Commerce Committee's Subcommittee on Health, along with other committee members who are asking for the wording to be changed on the plan. Willis said the subcommittee has to approve the resolution before anything else can happen.

Pallone didn't return calls for this story.

Sears said he hopes bill 198 is resolved in the near future. The plan is very important to those children who have brain injuries and their families, he said, because it will gives them a voice and the help they need.

"People with traumatic brain injuries need their voices heard," said Sears. "For myself, I wish there was a PABI plan 21 years ago. My life would have been a lot different."

For more information on the PABI plan, go to www.voiceformychild.com or www.myspace.com/searscraig.