When the Jerry Lewis Telethon airs this weekend on ABC, one 7-year-old who will be featured has a Duluth connection.
Abbey Umali, who lives in Redlands, Calif., has Dejerine-Sottas disease, a rare type of muscular dystrophy that damages the peripheral nerves, which carry signals from the brain and spinal cord to muscles, according to the Muscular Dystrophy Association.
Umali’s mother, Wendi (Waterhouse) Umali, grew up in Esko, while Umali’s grandparents, M.L. Sather and Jim Howe, live in Duluth.
Sather said her granddaughter is tentatively scheduled to appear on the telethon at 11 p.m. Sunday and then again on 12:30 p.m. on Monday.
The telethon starts at 8 p.m. Sunday and ends at 5:30 p.m. Monday.

Jason Mitchener, an author and songwriter with Dejerine-Sottas, recently found his way to this site. Despite being severely affected by Dejerine-Sottas, the disease hasn’t managed to slow him down; he’s the author of Just Passing Through: Notes from a Fellow Traveler, a book of devotionals; writer or co-writer of ten contemporary Christian songs on a CD of the same name; contributor to Mosaic Moments: Devotionals for the Chronically Ill, and wrote songs for the albums Follow Him Home by Steve Cass and Kaly, Tonight. He’s got note cards and postcards of his artwork and a disability awareness coloring book for kids on his website, and even does public speaking appearances about disability for Christian and secular audiences in Arizona.
You can drop Jason a line on the Dejerine-Sottas message boards if you’d like to contact this talented man. Jason, thank you for introducing yourself; our numbers may be few but our community gains much with each new member.

Melodies of My Life shares a no-holds-barred coming of age portrait of a young woman who refuses to let a chronic and debilitating illness define who she is or what she can achieve. At thirty-one, author Denedria Banks wears many hats—from daughter to sister to friend; from public speaker to single, fun-loving, independent Black woman; and from medical social worker to woman with a disability.
Each chapter samples the complex chords, harmonies, and disharmonies of her life’s passions. Banks explores various stages that impacted her search for self, including self-love and happiness. She ultimately discovers the true love that comes from putting yourself first, loving your every imperfection, and literally taking each day one step at a time.
In her own words, Denedria provides a rare glimpse into living with a debilitating disease. Doctors, nurses, physical and occupational therapists, students, people with disabilities and their loved ones, and those interested in the human condition will appreciate the journey of this young woman’s life—its darkest hours and brightest successes.

About the Author

Denedria Banks, MSW, ACSW, is a medical social worker, public speaker, and business owner. Although diagnosed at nine with Charcot-Marie-Tooth syndrome, a degenerative nerve disorder, she has beaten the odds and lives independently.

Little flakes of paper fall to the board in Keith Bonnstetter’s lap, as he carves the folded white sheets with small, golden scissors. A tiny awl creates dots, eyes and lace-like holes. Minutes later, an angel begins to appear at the edge of the folded snowflake.
“If people send me pictures, I use them,” the Davenport resident said. He points to a snowflake with intricate pumpkins, pineapples, deer, rabbits, rocking horses, snowmen, leaves, butterflies and cardinals. Each represents a facet of a family.
First he draws the design, then copies it onto tracing paper. He folds thick white paper into fourths, then on an angle. “It has to be perfectly creased,” he said, reinforcing a fold with his thumbnail.
He transfers the design onto the folded sheets and then begins to cut. The scissors, he said, have to go in at a straight angle. “That’s what makes everything evenly sized.”
He started cutting snowflakes in college but did not do detailed ones until about five years ago.
“When I first started, I didn’t do personalized ones,” he said. “I did a lot of themes. So, I started that way. Then, somebody asked if I would do a graduation from high school, and they gave me a list of everything they did in high school.
“People like that, because it’s about them.”
Mr. Bonnstetter turned his hobby into a business as a way to help pay medical bills for his daughter, Claire. In 1999 he and his wife, Marsha, took then 4-year-old Claire to the Mayo Clinic because she was having trouble walking. Doctors there told the couple Claire had Dejerine-Sottas disease, a nerve disorder. She’s since improved through chiropractic care, a priest’s blessing and therapy.

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Sign the birthday card for Christopher Reeve and an anonymous donor will contribute $1 to the Christopher Reeve Paralysis Fund.

While Googling for the latest information about DS, I ran into an article about filmmaker Judy Garland Piersol, who has Dejerine-Sottas, and is working on a semi-autobiographical movie entitled Split Real.

In the film, two women dream of making an artistic feature film and write a formulaic script to try to finance it. The crummy script, of course, becomes a big hit and the women are both offered high-paying jobs as screenwriters.
But the character with a disability, Bette Davis Crawford, realizes her physical condition is rapidly deteriorating, and, if she waits, she may never be able to make her film: "her baby," as Piersol calls it.
"The script is about public and private realities," Piersol says. The character’s disability is "a large part of the story. She doesn’t even tell her project partner the severity of the issue. But by the end of the movie, the audience is shown a successful Bette, in a wheelchair, with a boyfriend, making her movie. She’s come to terms with it.”