Windsor native aids national effort

Published 12:51 pm Thursday, January 29, 2009

NEW YORK, NY – A national plan to help children with pediatric acquired brain injuries (PABIs) is getting a helping hand from a Bertie County native.

Jennipher Dickens, a native of Windsor and the mother of a two-year-old with a pediatric acquired brain injury, is part of the staff of the Sarah Jane Brain Project, which has outlined a continuum of care models system for children affected by pediatric acquired brain injury.

Causes of pediatric acquired brain injuries include traumatic events such as motor vehicle accidents, sports injuries, violence/child abuse or blast injuries from war as well as non-traumatic causes such as brain tumors, strokes, meningitis, insufficient oxygen, poisoning, ischemia and substance abuse. Those injuries are considered pediatric from birth through age 25.

“This is something that has never been done before in medical history, despite the fact that pediatric acquired brain injuries are the number one cause of death and disability for children in the United States,” said Dickens, who serves as Director of Communications for the Sarah Jane Brain Project (SJBP). “The PABI model system begins with preventing brain injuries and continues on through initial diagnosis, acute/intermediate care and rehabilitation.”

The Sarah Jane Brain Project took center stage nationally on the day of President Barack Obama’s inauguration. At 12:01 p.m. on January 20, the project’s founder, Patrick Donohue, sent the first official letter via facsimile to the incoming president.

The letter to President Obama coincided with the release of the first National Pediatric Acquired Brian Injury Plan, which was simultaneously posted on the website for the Sarah Jane Brain Project

The plan is being posted online for all interested parties, such as families of brain injury survivors, medical professionals and educators, to view and make comments.

All of those comments, suggested changes and additions will be reviewed by the SJBP’s National Advisory Board and then, if approved, will be incorporated in the final version of the plan.

The plan will then be converted into federal legislation in the form of the Pediatric Acquired Brain Injury Act of 2009 and presented to Congress. The Project’s goal is to have it passed and signed by Sarah Jane’s fourth birthday on June 5, 2009.

The Sarah Jane Brain Project is the creation of Donohue, whose three-year-old daughter, Sarah Jane, was violently shaken by her baby nurse when she was five days old. The result was a massive brain injury leaving Sarah Jane now unable to walk, talk, crawl or even sit up on her own.

After researching traumatic brain injury, Patrick Donohue discovered there was little known about the human brain and its potential for recovery, particularly in children. That was the beginning of creating the Sarah Jane Brain Project and the resulting PABI Plan.

Donohue believes the plan will help many Americans, some of whom do not realize they need help at this point.

“According to Center for Disease Control statistics, two of every 100 adults are living with some form of traumatic brain injury, which may or may not have ever been diagnosed,” Donohue said. “Many of these injuries may have been sustained as children due to seemingly mild head trauma for which medical care was never sought.

“The SJBP will enable parents, who suspect their child may have a brain injury or youth who themselves think they may have one, to request an evaluation to determine if a PABI is in fact the cause of whatever issues they are having,” he added.

Dickens said that help will be particularly valuable in the rural areas of the country, including the Roanoke-Chowan region of eastern North Carolina.

“The Sarah Jane Brain Project will benefit people in northeastern North Carolina and other rural areas perhaps more than anywhere else in the country,” she insisted. “It will force the same standard of care for children in rural America as what they would receive if they were in the best medical facility in the country.

“My move to New York City is a perfect example of what should not have to happen – in order to get better therapy services for my son that aren’t available in North Carolina; I had to move here,” Dickens added. “When the National PABI Plan is fully implemented across the country, people won’t have to pack up and move 500 miles away just to get help for their children – the Sarah Jane Brain Foundation will make sure of it.”

Dickens, whose two-year-old child was shaken when he was seven weeks old, became involved with the project after meeting Donohue and his daughter in Vancouver, Canada at a conference on Shaken Baby Syndrome.

“Up until that point, I had been focused only on Shaken Baby Syndrome prevention efforts – it never even dawned on me to explore helping children who already had been shaken,” Dickens said. “After Patrick told me what he was doing to help not only children who had been shaken, but all children who have been affected by brain injury, I was 100 percent on board from that point forward.

“Like most parents whose child has been through a traumatic event, I will do anything to help my son, so the opportunity to help not only him, but the millions of others like him was an easy decision for me,” she added.

Donohue said Dickens’ abilities and passion for helping those who have PABIs made her beneficial to the organization.

“Jennipher has brought three critical characteristics to The Sarah Jane Brain Foundation: passion, understanding and insight,” he said. “Jennipher has an incredible amount of passion and energy for helping the millions of children/young adults and their families suffering from pediatric acquired brain injury.

“Her own personal experience as a mother of a survivor of PABI has given her a unique vantage point of understanding what most families deal with on a daily basis, and when coupled with her professional background, she has given the Sarah Jane Brain Project some key strategic insight in developing our vision for the future,” he added. “There is no question we would not have accomplished all we have so far if it wasn’t for Jennipher’s involvement and commitment to this cause.”

As a native of the Roanoke-Chowan region, Dickens said she would especially encourage those in Bertie, Gates, Hertford and Northampton counties to go online and view the plan and leave any suggestions or comments. The deadline for comments is February 6.

“We want to hear the voice of everyone who is touched by this issue,” she said.