Going beyond limits
Children's Neurobiological Solutions seeks to improve lives
By Wendy Foster,Correspondent
November 2, 2005
Source: Liberty Suburban.com
Being accepting and refusing not to settle are not mutually exclusive states of mind. In fact, in the case of some parents who have children with special needs, the exact opposite is true.
Matt and Saba Bando are unfailingly accepting, loving and proud of their 6-year-old son, Zain. At the same time, the Downers Grove family refuses to settle for the notion that his future holds limitations.
Born two months prematurely and weighing in at less than 2 pounds, Zain endured a brain injury and complications with resulting developmental delays. He is unable to stand independently or walk, and has only partial use of his hands. Unimpaired cognitively, Zain is bright, sociable, funny and astonishingly articulate.
"We accept the situation as it is right now. If Zain needs something different with any type of assistance that's required, we need to address where he is right now. There's a lot to be said for living in the present, addressing things where they are," Saba Bando said.
Toward this end, Zain receives about three hours of extensive therapy each day. The objective of the therapy, called advanced biomechanical rehabilitation, is to strengthen the "structure of his body," Bando said.
Because the therapy is not offered in the United States, the Bandos travel to Montreal regularly to oversee Zain's progress. Bando researched the therapy extensively before starting Zain's rigorous program a year ago.
She found that for many children "the before and after results are really profound. Kids with involvement that was really great are seeing functional changes," Bando said.
"We've seen structural changes, but they haven't translated into a milestone yet, which is to be expected. At about 1,000 hours, you start seeing changes. A year is about 1,000 hours," she said.
Bando expects that Zain will walk and run in the not-too-distant future.
Supporting a cause
While working diligently on Zain's therapy, Bando said they are also "investing in the future" by supporting Children's Neurobiological Solutions. The California-based organization is a nonprofit foundation that funds medical research focused on pediatric brain repair and regeneration. The research is being conducted at renowned facilities including Harvard, Johns Hopkins and University of Wisconsin at Madison, Bando said.
Teresa Pedroza of Berwyn has been involved with CNS since its inception. Her 6-year-old son, Danny, has cerebral palsy. She explained, "He has vision impairment and orthopedic deformities secondary to the brain injury. He doesn't use his body the way that you and I do. He can't sit or walk independently.
"CNS is unique when it comes to organizations vying for my attention. It's the only one seeking a cure for children with neurological disabilities or disorders. The March of Dimes focuses on prevention and United Cerebral Palsy on helping children with cerebral palsy live successful lives. It accommodates their lives as they are with the disability. CNS goes beyond the scope to improve the quality of our children's lives. Obviously, the ideal would be a cure. But we're hoping our children will be able to gain some functional skills that will improve the quality of their lives overall. It's not like any other organization," Pedroza said.
Aside from working toward an actual cure for neurological impairments, CNS also is different from other organizations in that it is not disease-specific. Instead, Pedroza said, "it's organ specific. We feel that the common bond of brain and the nervous system unites us. So rather than focusing on one disease, we're focused on the developing brain," she said.
With an estimated 14 million children in the United States with some type of neurological disorder or injury including cerebral palsy, Down syndrome, epilepsy, autism and many more, the impact of successful research could potentially help millions.
What also sets CNS apart from other foundations is that the research it supports is focused exclusively on the pediatric brain.
Tina Iacono of Elmhurst has a 5-year-old son, John, who has cerebral palsy. Involved with CNS since its Chicago chapter started four years ago, Iacono said that this area of concentration makes great sense.
"It's a better approach than other foundations, which look at old or diseased brains. Let's look at the pediatric brain and see what's happening in the undiseased brain, and watch how it develops. They have found that they don't know much about the brain and how it develops over time," Iacono said. "Whatever research we do will translate outside of just children. We're looking at a different brain than anyone has ever looked at, and not just disease by disease."
All of the mothers are grateful for the advances made through the efforts of organizations such as United Cerebral Palsy and March of Dimes.
"These organizations are wonderful. If it wasn't for them, some of our kids wouldn't have wheelchairs or orthotics. These organizations are a vital part of our society," Pedroza said.
However, CNS plays a separate, crucial role.
"This goes beyond making a better wheelchair or trying to prevent babies from being born prematurely," Bando said. "The fact is a premature baby can happen to anyone. And once a child is born and survives, what do you do with them then? There are lots of fantastic things done now -- special education, adaptive equipment. Now we need to take things one step further."
"Saying that these kids' lives are the way they are is not acceptable to us as parents," Iacono said. "Something is out there for them and they will improve. We know that already. The scientists have said so, and we've seen results. We've read the reports and really truly feel that something will happen in our child's lifetime. I feel like we're on the verge of something huge."
She continued, "Our researchers have made advances. Already they're going to clinical trial for a specific kind of neurological disorder, and they're making huge gains.
"We're not a bunch of moms sitting around wishing for miracles. The reality is that things will happen in our children's lifetimes. Something will come out of this research. ... We really truly know that something will happen in the near future but we have to keep these scientists working. It's no longer a case of what if. It will happen," Iacono said.
Pedroza said that even if no real milestones are reached during Danny's lifetime, all of the time and effort directed at supporting CNS will still be worthwhile.
"If our children won't benefit to the same extent as the next generation, it will still be worth it so other families won't have to endure the heartache. The sheer pain of not being able to offer our children anything better. It will still be worth it," Pedroza said.
Working toward a cure for neurological disorders is not about lack of acceptance of a child's limitations.
Iacono stressed, "I adore John, I accept him. But am I going to accept this as his future when I knew there's a chance he can get better? Now there's real hope for him. We're not willing to sit back and accept the fact that this is the most we can do for them. We know for a fact that science has shown that there's more out there," she said.
The families are ensuring that while working hard to achieve the best they can for their children, they have all of their bases covered. Daily, they work on therapies to increase strength and functionality. They are also "praying for a miracle but funding research for a cure," Pedroza concluded.
Matt and Saba Bando will host a fundraiser for the Children's Neurobiological Solutions foundation from 6 to 8 p.m. Sunday, Nov. 13, at Amber Restaurant in Westmont. Tickets are $75 per person, and proceeds will benefit CNS. The foundation's founder will be present to explain CNS and ongoing pediatric neurological research.
For more information or to attend, call Matt and Saba Bando at (630) 724-1787. For more information on CNS, visit www.cnsfoundation.org.