Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Archive for the ‘spina bifida’ Category

Wheelchair athlete lobbies Maryland for integrated athletics

Wednesday, March 12th, 2008

Tatyana McFadden, disabilities, disability newsUrges legislators to allow students with disabilities to compete alongside typical peers

From the Baltimore Sun:

Tatyana McFadden, an internationally recognized Paralympic athlete, is lobbying lawmakers in Annapolis to ensure that athletes with disabilities can compete alongside their non-disabled peers.

McFadden, a high school senior who earlier sued for the right to share the track with her classmates in Howard County, told a Senate committee that “no student should have to fight to be accepted in high school.”

McFadden was among those who spoke in favor of a bill that would require schools to allow athletes with disabilities to play wheelchair basketball or tennis, to swim or to otherwise play sports among themselves or side-by-side with able-bodied students.

(more…)

‘Brownback abortion bill’s focus: disabilities’

Monday, March 10th, 2008

The headline on a story by Rob Hotakainen in the Wichita Eagle describes the Prenatally and Postnally Diagnosed Conditions Awareness Act as an “abortion bill.” The measure, co-sponsored by Sens. Sam Brownback (R-Kansas), at left, and Edward Kennedy (D-Massachusetts), would provide for accurate medical information to be offered to parents who receive a diagnosis of a disability either before birth or up to a year after the birth of a child.

Hotakainen describes the bill as one that “aims to reduce the number of abortions tied to genetic disorders.” He says Brownback views the bill as part of his campaign for “the culture of life,” and describes Brownback as saying that “children with special needs are viewed as being specially touched by God” in some cultures. Kennedy’s office declined to comment on the legislation, which passed a Senate committee recently. An excerpt:

“We’re just saying, instead of killing the children, let them live,” Brownback said … Currently, Brownback said, 90 percent of pregnancies are aborted when a genetic test shows that a fetus will develop into a child with Down syndrome, spina bifida, cystic fibrosis or dwarfism.

… “I’d like to see it come way down,” Brownback said. “I think these children are beautiful and sacred children, and they should be allowed the chance to live.”

(more…)

Two years after life-saving surgery: Baby Noor’s troubling future

Sunday, March 9th, 2008

From the Atlanta Journal-Constitution:

Two years ago, Georgia Army National Guard soldiers spurred an effort to bring a baby with spina bifida from Iraq to Atlanta for surgery.

Now back at home with her grandmother Soad in Baghdad, Noor’s future remains uncertain. Her family has been targeted by insurgents for taking help from Americans. Noor al-Zahra is paralyzed from the waist down. Soad worries about how she will be able to provide adequate care for her granddaughter. The child’s parents divorced shortly after the surgery, and her father has since remarried.

Earlier story here.

Related story: ‘Baby Miracle’ recovering from surgery

‘Baby Miracle’ brought to Florida for surgery

Thursday, February 28th, 2008

From the Tampa Tribune, USA Today:

A baby girl who was born with severe deformities in Samoa and refused medical treatment in New Zealand has been brought to Florida for surgery with the help of THORN Ministries, an American faith-based group.

Miracletina Nanai, also known as ‘Baby Miracle,‘ is now six months old. (At left, with Kristin Taylor, left, and her mother, Mikaele Nanai.) Miracletina reportedly has deformities of the face, brain, spinal cord and palate, and is missing some fingers. After birth, doctors advised family and staff at the hospital not to feed her, but her parents reportedly snuck in milk and fed her with a plastic syringe when the nurses weren’t watching.

Because Samoa doesn’t have medical facilities needed to correct her disabilities, the country appealed to nearby New Zealand for help. But the New Zealand government denied the baby’s family an entry visa in December, saying there was no treatment that would benefit her quality of life.

Kristin Taylor, co-founder of THORN Ministries of Riverview, Florida, worked to get U.S. approval of visas and passports so the baby’s family could travel to Florida for up to six months. The approvals came after John Ragheb, chief of pediatric neurosurgery at Miami Children’s Hospital, and S. Anthony Wolfe, chief of the hospital’s plastic surgery division, agreed to provide medical services for the baby free of charge through the Child Foundation Inc.

(more…)

Vegas teen is the wheel deal

Tuesday, February 19th, 2008

He turned his wheelchair into a super skateboard and a new sport was born

From ESPN sports on ABC News, a story with amazing video about a teenager from Las Vegas who created his own sport. He calls it “hard-core sitting.” Sixteen-year-old Aaron Fotheringham does spins and tricks in his wheelchair that would make any skateboarder envious. Check the video for his signature move: the back flip.

Thanks to exposure on Youtube and a relationship with the wheelchair company Colours in Motion, Fotheringham has become an international sensation. He has spina bifida.

International surgeons contest Dutch euthanasia of babies with spina bifida

Saturday, January 26th, 2008

From Radio Netherlands Worldwide:

Pediatric neurosurgeons from 12 countries, writing in an article in the medical journal “Child’s Nervous System,” have expressed concern over the practice in the Netherlands of actively carrying out euthanasia on babies with spina bifida.

Speaking for the Dutch Pediatric Association, Edward Verhagan rejected the international criticism, arguing that treatment should not be given to infants unless there is some hope of improvement as a result of the treatment.

The current debate was touched off by Dutch pediatric neurosurgeon Rob de Jong, writing in the same journal. De Jong surveyed medical cases and found a number in which physicians dismissed patients as having no hope, only to find later that their initial diagnoses were incorrect. In one such case, a South African child with spina bifida was denied treatment, and years later was found to be alive and leading a “reasonably independent” life. “There is no reason whatsoever for active life-termination of these newborns,” he wrote. (more…)

Spina bifida reported down in North Carolina — but why?

Wednesday, January 9th, 2008

From the Charlotte News & Observer, Winston-Salem [NC] Journal:

Rates of spina bifida and other neural tube defects have declined in North Carolina by at least 40 percent since 1995, according to state data. The drop is being attributed to public awareness campaigns aimed at increasing intake of folic acid.

Two advocacy groups, the N.C. Folic Acid Council and the March of Dimes, also credited the passing of the low-carb diet craze with the lowered rate, which was reported by the N.C. State Center for Health Statistics. “Yet, there are still too many babies born with spina bifida, said Amy Mullenix, their statewide coordinator.

None of the public health experts interviewed pointed to prenatal testing as a reason for the drop in the rate of spina bifida, even though neural tube defects are among the primary targets of such testing.

(more…)

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This blog attempts to explore what we know about disability, and to chronicle the efforts of people who are seeking new ways to address familiar challenges.

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