To vote for Trenton Lane in the National Mobility Equipment Dealers Association’s contest to win a wheelchair lift-equipped van, go this link: www.nmeda.com/mobility-awareness-month/heroes/kansas/great-bend/1157/jill-lane. Voters can use the code 837 on their first vote and make it count for five. After that, they can vote once per day through May 13. In May, the lucky local heroes will be selected and wheelchair accessible vehicles will be given to them on national TV.
What is lissencephaly?
Lissencephaly, which literally means “smooth brain,” is a rare, gene-linked brain malformation characterized by the absence of normal folds in the cerebral cortex and an abnormally small head (microcephaly). In the usual condition of lissencephaly, children usually have a normal sized head at birth.
Lissencephaly is caused by defective neuronal migration during embryonic development, the process in which nerve cells move from their place of origin to their permanent location within the cerebral cortex gray matter. There is no cure for lissencephaly, but children can show progress in their development over time. The prognosis for children with lissencephaly depends on the degree of brain malformation.
Information from the National Institute of Neurological Disorders.
Heroism has many definitions.
A look inside the Eisenhower Elementary School library Wednesday afternoon revealed several of those.
Hero one – Trenton Lane, a 9-year-old third grader who suffers from the crippling neurological disorder lissencephaly. Confined to a wheelchair, he’s forced to rely on his teachers, parents and schoolmates to do just about everything for him. He’s learning and, by his standards, his quality of life improves. “The doctors said I didn’t have a very good chance of surviving past the age of two and if I did, I would not have a very productive life,” he said. “Fortunately I have proven them wrong time and time again. I am 9 years old and living life to the fullest. I am a hero because I have never given up.”
Heroes two and three – Brenna Bownes and Haleigh Ringo, two of Lane’s third grade classmates who seemed totally relaxed as they took turns reading a book about penguins to him. Lane had experienced a seizure not long before being rolled to the library, and it was unclear whether or not he comprehended the words or studied the brightly colored pictures. That didn’t matter to Bownes and Ringo.
Hero four and five – special education teacher Terri Rous and para-educator Trish Bailey who work tirelessly with Lane either in their special classroom or in the third-grade room. With flashing lights and beeps, they teach concepts such as addition to Lane in little chunks. “We assume he catches on” based on his limited ability to respond via simple switches or a raise of an eyebrow, Rous said.
Last, but certainly not least, heros six and seven – Jill and John Lane, the boy’s parents. “People don’t realize how much there is to this,” she said of caring for a handicapped child.
Now, with National Mobility Awareness Month to be celebrated in May, there is a chance to at least recognize some of this heroic action. The National Mobility Equipment Dealers Association is seeking three local heroes to win a new, free wheelchair-accessible van.
“National Mobility Awareness Month is the inaugural May celebration that encourages people with disabilities to enjoy active, mobile lifestyles,” a statement on the association’s website reads.
This would be a godsend for the Lanes. The Great Bend family is wanting friends and fellow residents to log on and vote for them in this competition.
“He weighs 40 pounds and his chair weighs 40 pounds,” his mother said. He is getting ready to be upgraded to a heavier wheelchair.
Now, the Lanes have a van, but no lift for Trenton. “He can’t go anywhere with just me,” she said.
But, as noted above, this is a story about heroes. Sure, the new van would be great, but Jill said this effort is more about awareness.
“People with disabilities are just common people,” Jill said. Trenton will visit Great Bend Middle School today to help erase some of that handicapped stigma.
And, that is the purpose of NMDA’s awareness month – to educate the public that people with disabilities constitute the second largest minority group in the United States. Over 18 million people in the U.S. and Canada have mobility issues.
“A Local Hero is you or anyone in your community – a caregiver, veteran or person with a disability –who is dealing with or overcoming mobility challenges,” the NMEDA site notes. The top three Local Heroes will be chosen from submitted written or videotaped stories. “It may be you or someone you know.”
But, the Lanes don’t need anyone to tell them what a hero is. “It’s really humbling to know so many people support us,” she said the community which has already cast over 900 votes for Trenton.
Rous said it is unfortunate that so many don’t understand those with disabilities. But, Trenton’s sitting with his fellow students helps. “It’s good for him to be with his peers, even if it’s just for a little bit,” Rous said.
That goes both ways. “It’s good for them as well,” she said of the others. “They’re not afraid anymore.”