Wilton man, Craig Sears, leads effort to introduce national brain injury act

WASHINGTON, D.C. -- One Wilton resident called it "Independence Day for brain injury survivors."

Patrick Donohue, father of Sarah Jane -- who was brutally shaken by a private nurse at 5 days old six years ago and is on the long road to recovery -- said "today was an unbelievable day for millions of families across the country with a kid with a pediatric acquired brain injury."

Sears and Donohue were two of the speakers on Wednesday at a press conference in the U.S. Capitol to announce the introduction of The National Pediatric Acquired Brain Injury (PABI) Plan Act, tabbed HR 2600.

U.S. Rep. Leonard Lance, R-N.J., the bill's primary sponsor said the PABI Plan Act will make it easier for families across the nation to receive treatment for a condition with devastating consequences.

"The National Pediatric Acquired Brain Injury Plan is bipartisan legislation that seeks to develop a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth -- brain injury."

According to the Centers for Disease Control, more than 765,000 American youth age 25 and younger enter a hospital emergency room every year with a new traumatic brain injury. More than 80,000 are hospitalized, and over 11,000 of them die annually.

"When a child suffers a brain injury, every American family is confronted with difficult decisions in terms of care, research and support," Lance said. "Systems of care are different from state to state, random from school district to school district, and vary from one doctor's office to another. What is needed is a national clearinghouse of information and resources for children impacted by brain injuries and their families."

Donohue, who, since his daughter's horrible treatment at the hands of a nurse who is currently serving 10 years in prison, has founded the Sarah Jane Brain Foundation and www.thebrainproject.org, believes the act provides a "unified system of treatment" for those suffering from brain injuries.

"This is an historic day for the millions of American youth who suffer from the number one leading cause of death and disability -- brain injury -- as well as their families," Donohue said. "This bill, backed by Congressman Lance, Congressman Jim Himes (Connecticut, D-4), for whom we are very grateful he became an original sponsor, and others, would ensure families won't have to reinvent the wheel when their child is impacted with a brain injury."

Donohue also praised Sears -- who suffered his traumatic brain injury 21 years when he was thrown from his motorcycle -- for his persistence in pushing this issue to the highest levels of government.

"Craig has been an incredible advocate for traumatic brain injury," Donohue said. "He's been instrumental in speaking firsthand with people that can affect change. His experiences are not unique. Craig has been in meetings with congressional leaders, and he has been well-received. Craig deserves a lot of credit for this act. When we walked into the offices of congressmen, they knew what we were talking about because of Craig's advocacy."

"I call it our Independence Day for brain injury survivors, because I know first hand what it is to lose my independence," Sears said. "For myself and my family, I wish that on that July day (in 1990) that we had (the PABI Plan Act), so that the state, the cops, the judges -- the people that had power over me -- had the resources to deal with and know about my brain injury. So many people have slid through the cracks and ended up on the streets, in prison or on drugs. This is an historic day."

Sears drew inspiration from Donohue as he watched the father take care of Sarah Jane the last three-plus years as they fought for this act side by side.

"To be very honest I'm at a loss for words," Sears said. "Patrick is a role model for every parent in the world. He's a prime example for every parent in the world. I've been traveling with him for the last three-and-a-half years, and I admire him like you wouldn't believe. I can't hope to wonder how different my life would be today if this act was in place 21 years ago."

Also on hand Wednesday was Barbara Geiger-Parker, president and chief executive officer of the Brain Injury Association of New Jersey.

"This act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries," Geiger-Parker said. "We applaud Congressman Lance and the other members of Congress for so-sponsoring this critically important, groundbreaking legislation."

The PABI Plan Act would create a national network of 52 state Lead Centers of Excellence, one for every state, plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan on their own state's unique demographics, geography, laws, infrastructure, financing, and causes of brain injury without duplicating current practices.

In addition, this legislation will focus on individuals with a "mild" traumatic brain injury, which accounts for 80 percent of brain injuries each year, commonly referred to as concussions, as well as rural communities, which make up 25 percent of the population and have higher incidence rates of brain injuries.

For example, the 52 state Lead Centers would help children suffering from sports-related injuries by providing additional information, resources and care. Donohue pointed out that the federal government spends less than $10 million a year on traumatic brain injuries -- a fraction of what is invested in research for other illnesses and diseases with much lower incidence of occurrence.

Donohue was most impressed by the bipartisan sponsorship of the PABI Plan Act that included "some of the most conservative members of Congress to liberal icons."

Among the nearly 50 co-sponsors were Reps. Tammy Baldwin, D-Wis., John Barrow, R-Ga., Marsha Blackburn, R-Tenn., Earl Blumenauer, D-Ore., Jo Bonner, R-Ala., Michael Burgess, R-Texas, Shelley Moore Capito, R-W.Va., Andre Carson, D-Ind., Gerald Connolly, D-Va., Marcia Fudge, D-Ohio, Barney Frank, D-Mass., Elton Gallegly, R-Calif., Raul Grijalva, D-Ariz., Michael Grimm, R-N.Y., Gregg Harper, R-Miss., Jesse Jackson Jr., D-Ill., Sheila Jackson Lee, D-Texas, Peter King, R-N.Y., Larry Kissell, D-N.C., Carolyn Maloney, R-N.Y., Jim McGovern, D-Mass., David McKinley, R-W.Va., Brad Miller, D-N.C., James Moran, D-Va., Donald Payne, D-N.J., Laura Richardson, D-Calif., Bobby Rush, D-Ill., Pete Sessions, R-Texas, and Patrick Tiberi, R-Ohio.

On Thursday, it was learned Connecticut Rep. John Larson, D-1, had also signed onto the bill.

Donohue will never forget seeing his baby girl, lying in the hospital with two broken collarbones, four broken ribs, and the loss of 60 percent of the rear cortex of her brain from the violent shaking of a woman he described as a "monster" as staff members tried to establish an intravenous tube in her arms and feet.

"Her mouth was wide open and tears were running down her face, yet she could not scream; she had no voice," Donohue said. "I spoke on behalf of Sarah Jane today. My job is to be a voice for her. Today was an unbelievable day."