Despite being afflicted with a rare and debilitating neurodegenerative disorder known as late infantile Batten disease, which has left 7-year-old Bridget Rose Kennicott without vision and without her ability to cheer for her beloved Chicago Bears. But it has not stopped her from supporting the team, according to her mother.
“She’s a huge Bears fan,” Sara Kennicott said of the countless Sundays Bridget would spend with older brother Harrison and father, David, cheering the Bears to victory. “The whole family is Bears fans.”
But now it is the Chicago Bears, specifically all-pro linebackers Brian Urlacher and Lance Briggs, who are supporting Bridget.
Urlacher and Briggs "don't usually do events," said Wayne Jett of Sideline Marketing. "And this is the first time they are doing an event together."
Sideline Marketing, which helped orchestrate the autograph signing, is bringing together two perennial Pro Bowlers in Urlacher and Briggs with hopes of attracting as many Bears and NFL fans as possible to help in the cause. The two will sign autographs from 6 to 8 p.m. Friday, June 1, at the , 28156 W. Northpointe Parkway; a portion of the proceeds will benefit Bridget and her fight against Batten disease.
Batten disease, or neuronal ceroid lipofuscinosis, according to the Batten Disease Support & Research Association, is an always-fatal disease that affects mental developmental, causes severe seizures and a gradual loss of gross and fine motor skills. Children inevitably become blind, bedridden and unable to communicate, rarely living past the age of 12.
Bridget was first diagnosed with late infantile NCL in 2009 (one of 10 different forms of Batten disease) after seizures continued to increase in frequency and other symptoms became obvious for what should have been a healthy, happy little girl.
“Bridget was fine until about 3 years old — that’s when we first noticed some (early warning) signs,” said Sara.
Although a very scary and devastating diagnosis for any child, the Kennicotts have been amazed at Bridget’s fight and inspiration since her 2009 diagnosis.
“It’s amazing that a little girl who can’t really participate, and can’t communicate, has brought so many people together on so many different levels,” Sara said of how she has seen so many in the community pull together for Bridget. “When people hear about her story, they become so supportive of us and of her.”
In fact, a former student’s parents stepped up and initiated contact with the Kennicotts to see if they were interested in being a part of the signing event.
“We are so blessed,” Sara said. “To have Dana (Burgess) come to us thinking of (Bridget) shows that people are compassionate, not only about our family, but the Batten community.”
This is not the first event organized on behalf of the fight against Batten disease. In fact, the Kennicotts have helped raise more than $50,000 to fight the disease through various projects, including the participation with other area Batten children in the 5th Season, which on May 5 was held at the Cotillion in Palatine for the second time in what is intended to become an annual event.
“We have funded different research projects and experimental treatments,” said Sara, a teacher at North Barrington School and former graduate of Barrington High School.
“They have been making some good progress and most of the major breakthroughs have happened in the last 12 years,” she said of the many doctors and university research studies all over the country the Kennicotts have helped fund through www.bdsra.org/. “Research has come a long way in such a short amount of time, but there is still a lot of work to do.”
But for now, the Kennicotts are looking just to take life day by day.
“Life has been relatively stable lately, and we have just been living in the moment,” said Sara of how her family’s life has been thrown into disarray since the diagnosis. “But then this awesome event happens and we get to go and meet some of the biggest names in football, it’s just amazing that this is coming to fruition.”
For more information about Bridget, visit her website at www.hope4bridget.com. For more information about Batten disease, please visit www.bdsra.org/. For tickets to the upcoming Urlacher and Briggs autograph signing at the , please visit sidelinemarketingltd.com.