Justin and his adoptive mother

One person’s journey through the years ‘miraculous’ — and costly

From the Anchorage Daily News:

Justin Scott sits at his dining room table dabbing pink frosting on a snowman sugar cookie and humming “Silent Night.” The chaos of his young niece and nephew decorating their own cookies bubbles around him.

If the 20-year-old could sing to his family maybe he would. But Justin can’t form the words to talk. His best communication is through jerky motions of American Sign Language.

There are a lot of things Justin can’t do.

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From the Dallas Morning News:

When David Zeig was 6, religious school teachers said his Asperger’s syndrome would prevent him from being able to make his bar mitzvah. Years of tutoring enabled him to reach his goal. Now his family has started a fund to help train religious school teachers to help children with autism, ADHD, dyslexia and other neurological disorders. They’ve raised $17,000 so far.

“I see many parents with a child who has recently got the diagnosis of autism who don’t see Hebrew school as an option for their kids,” says [David's father Louis] Zweig, 43. “It became brutally apparent to me that it was necessary to train our teachers about a host of neurological disorders, and most religious schools don’t have the budget to do that.”

Alexandra Wolfond at a center for disabled children in Ho Chi Minh City (New York Times photo)

From the New York Times:

Doing charity work while on vacation no longer has to mean backbreaking labor and dorm-like accommodations. A new kind of philanthropic travel lets wealthy vacationers do good works while still enjoying plush hotel suites and fine restaurants.

Artisans of Leisure, based in New York, organized a seven-day trip to Paris and Morocco for the end of this month for Rhonda Wolfond and her teenage daughter Alexandra that will cost $50,000. (more…)

From the (Denver) Rocky Mountain News, a feature about a house that was designed to serve a family whose daughter has Prader-Willi Syndrome. The home is part of a tour to benefit the Central City Opera Guild.

Prader-Willi syndrome causes mental retardation, behavioral problems, low muscle-tone and an insatiable appetite so severe that parents must lock away food and strictly limit calories to prevent life-threatening obesity in children who have it.

The dream home of Paul and Amy Wissmann was designed to be safe and comfortable, and to reflect the personalities of all five family members.

In the kitchen, a sleek lock system - consisting of five tiny black buttons and one small knob - blends seamlessly into cream-colored, country French-style cabinetry and matching panels on the appliances (which also remain locked).

The Wissmans are seeking to collaborate with other parents in hopes of creating an adult living situation in which their daughter could live semi-independently with peers. “There are no places for these kids, and we want them to have a safe, long-term living environment where they can be happy,” Amy says.

More information on Prader-Willi Syndrome can be found at www.stillhungryforacure.org.

From the San Jose Mercury News:

Benetech, a technology non-profit based in Palo Alto, announced this week that it has received a $32 million federal grant to expand Bookshare.org, a website that provides scanned books and periodicals to people who are blind or dyslexic.

The grant will allow it to open up its collection of more than 34,000 volumes free of charge to all blind or dyslexic students from kindergarten through graduate school.

“We believe this project could potentially benefit thousands of students . . . by exposing them to an Internet library with a multitude of books, magazines and newspapers in accessible formats,” Patty Guard, acting director of the Department of Education’s Office of Special Education Programs, wrote in an e-mail Thursday.The 5-year-old Bookshare already has 6,000 to 7,000 users, but that should increase to about 100,000 as a result of the grant, said Bookshare CEO Jim Fruchterman, who last year won a MacArthur Fellowship for his work.

He describes the site, which he thought of after watching his son download music from Napster, as “Amazon.com meets Napster meets Talking Books for the Blind - but legal.”

From Canada.com:

Sixteen-year-old Joe Parsons of Searcy, Arkansas, won a Saskatchewan elk hunt when his mother applied to Hunt of a Lifetime, a non-profit organization that grants hunting and fishing wishes for children with life threatening illnesses. Joe has Duchenne muscular dystrophy.

Joe’s three-day hunt, which begins today, will be at a game preserve, increasing his odds of bagging a big one.

Joe’s wheelchair is outfitted with a battery-operated rifle mount that moves side to side or up and down so he can get a bead on his game.

Since Joe’s arms have limited mobility, a straw-like tube attaches to the trigger mechanism, so when he’s ready to fire, all he does is sip on the straw to pull the trigger.

A Hollins professor and polio survivor leads a global organization to help others with the disease.

From the Roanoke (VA) Times: A feature on Lawrence Becker, a philosopher and fellow at Virginia’s Hollins University who heads Post-Polio Health International. The organization is dedicated to enhancing the lives and independence of polio survivors.

Following his polio diagnosis in 1952, Becker’s parents insisted that he pose for photos as a March of Dimes poster child, a role which he resented. He details his journey from what his wife calls an “undercover crip” to a public advocate for the rights of people with disabilities.

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