Teen with spina bifida creates web site on adaptive driving

A teen with spina bifida has created a web site to help other teens with disabilities on information about adaptive driving.

Julianna Russell, who is 16 years old, created I Don't Need Easy after she decided to try to help other teens go through the process so it would be easier for them. Her interest began after attending a camp for people with spina bifida, out of a desire to help others feel less alone going through disability-related experiences.

Russell said she hopes to get contact information and calendars for local organizations for the disabled. But she's also trying to get young people with disabilities to post their stories to the site, making it like "a Facebook for the physically handi-cap," she said.

"I'm trying to get more stories," she said. "I want to get as many as I can."

Read more here: http://www.ledger-enquirer.com/2012/03/25/1983570/teen-creates-website-to-help-other.html#storylink=cpy

You can find her site at I Don't Need Easy.

Teen uses VGo robot to attend class

A New Castle teen with spina bifida who can't attend class due to a seizure disorder uses a VGo robot, shown in the above video, to participate in class from home. Chris controls the robot via remote, moving it through the hallways, and is able to see his teachers, the blackboard and classrooms. A teacher sits alongside him during the day to assist him and he's able to interact with his classmates and friends via the VGo.

Living with Spina Bifida: Abigail

Abigail talks about living with spina bifida, the importance of her family and reaching for goals.



If you have a child with disabilities and would like to find out more about adaptive sports, check out We Push Sports.

A Safe Haven

A 12 year old boy, Joseph Martin, will be able to take his wheelchair into his bedroom for the first time in his life and become more self sufficient, thanks to a project by Rebuilding Together. Joseph, who lives with his single mother Mary and sisters Holly and Rebekah, has to be carried up the stairs to his bedroom every night.

Joseph, who is on an able-bodied swim team, and likes to ski, carve and fly-fish, has had 39 surgeries. He was diagnosed with cloacal exstrophy, spina bifida and chiari malformation.

After his teacher Suzanne Nesbit made a documentary of the lack of access in Joseph's home to send to Oprah, local school officials and community members who viewed it decided not to wait. They found help to build a room with access for Joseph from Rebuilding Together. The project, slated to cost $100,000, is called A Safe Haven.

The aim of the addition is to make Joseph's living quarters accessible in every way.

A custom-made shower is part of the plans. A washing machine, dryer, stovetop and microwave will be at a level he can reach, and the rooms will be designed so he will always have enough space to turn his wheelchair around.

"This will be a place for him to live independently," said Warren, who will be recruiting volunteers once the project is closer to completion. "Joseph sells this project himself. He and his family have overcome so much, and everybody's embracing it as an opportunity to do something beyond themselves."

All this is huge for Joseph, who seems to have architect Lynn Walker's blueprints memorized. With great detail, he can reel off with preciseness what will be in each of the 1800 square feet of the addition.

His eyes beam as he rehearses the architectural plans.

"I will be able to bring my wheelchair into my room," said Joseph, who presently must be carried up the stairs each day. "And I'll finally be able to close my own door." via newsleader.com

Meet Tyler

Tyler Genest, who has spina bifida, talks about his work with a youth group through his church (in the second video) and how he's learned to handle dealing with a few bouts of depression due to multiple operations (seen in the first video) . Tyler is a well spoken young man who wants a future in radio.

Frequently Asked Questions about Spina Bifida

Via Spina Bifida Association site

Spina Bifida

This video describes what causes spina bifida and explains why its severity varies from child to child.

Back in the News: High school wheelchair athlete fights to compete against able bodied runners

[Visual description: Wheelchair athlete McFadden is seen racing on a track in her adapted racing wheelchair.]

From Sports Illustrated:

A female Paralympic medalist with spina bifida, Tatyana McFadden, faced opposition against participating in track events at her high school in Columbia, Maryland based on safety fears and the fear that she has an unfair advantage.

For the last year, she has waged legal action for the right to compete in high school sports, suing in federal court. She was allowed to race last spring. The county has backed off on the lawsuit. Yet there is another setback: the state ruled this month that wheelchair athletes were not eligible to earn points for their teams if they raced.

McFadden states that she wants to belong to a team and her biggest thrill was riding on the team bus with other athletes.Tatyana is quoted as saying "The big issue is that nobody has had to deal with this before."

Tatyana, who was adopted from a Russian orphanage by American parents, has competed in wheelchair sports since around the age of seven.

Tatyana McFadden 's photo appears in the magazine with the caption underneath "Wheel life- State officials say McFadden's chair gives her an unfair advantage".

The Tim Krahling story

I received a link to this article from a reader about Tim Krahling, who was born with severe spina bifida about 20 years ago. At the time of Tim's birth, there was a court fight about him . Eventually he was adopted and received surgery.

If you're interested, the article documents much of Tim's story - how he wound up with two sets of parents, biological and adoptive, and the efforts made to save his life.

Now Tim is a young man . In this narrated slideshow, you can meet Tim and hear his story.