Siblings

The final story in the series covering the 2014 MDA Clinical Conference addresses helping the brothers and sisters of children with disabilities

posted on April 11, 2014 - 1:57pm
"Anything we can say about being a parent of a person with special needs we can pretty much say for being a sibling of a person with special needs," said Don Meyer, director of the Sibling Support Project based in Seattle. Meyer talked about siblings of people with disabilities at the 2014 MDA Clinical Conference in Chicago during an afternoon session titled "Specialized Care," held March 18.

A family caregiver struggles to accept what is — and what will never be no matter how hard she wills it

posted on October 3, 2013 - 9:25am
Quest Vol. 20, No. 4
Mom (top, 2011) climbed to the top of a White Sands, N.M., dune with me just two years before her muscles were too weak to support her own breath.

Beth and Dan Gore have a most extraordinary family. Over the past dozen years, the Brandon, Fla., couple has adopted six children with disabilities, the youngest being Manny, a 3-year-old with congenital muscular dystrophy.

posted on January 7, 2013 - 9:15am
Quest Vol. 20, No. 1
Meet Manny. He's one of six children with disabilities adopted by Beth and Dan Gore of Brandon, Fla. Three-year-old Manny — who has merosin-deficient congenital muscular dystrophy and has been in and out of the hospital due to gastrointestinal, respiratory and cardiac issues — is the subject of Beth’s fifth published children’s book, Mighty Manny.

Michael Wogan, who had congenital muscular dystrophy and was killed in a Reno air show accident, enjoyed travel, airplanes and adventure

posted on September 21, 2011 - 9:00am
Michael Wogan had been looking forward to the trip to the National Championship Air Races in Reno, Nev. According to his younger brother James, “Michael liked to get out and travel, and he was so excited about getting on a plane.” Michael’s older brother Billy, 26 — who, like Michael, 22, and James, 19, has congenital muscular dystrophy (CMD) — was supposed to attend the show with their dad. When...
posted on March 31, 2010 - 10:20pm
QUEST Vol. 17, No. 2
Jacob Gapko has compiled the first-ever bibliography of books about young people with muscular dystrophy, with help from a Carnegie-Whitney Award from the American Library Association. Click on the title to access the bibliography: Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography
posted on October 1, 2009 - 3:26pm
QUEST Vol. 16, No. 4
When I was 12 years old, I received a diagnosis of Friedreich’s ataxia (FA), a rare neuromuscular disease. That’s also the year I met Ms. Wheelchair Maryland and started to dream of entering the Ms. Wheelchair pageant. But that goal quickly was overshadowed by the usual adolescent things.
posted on April 1, 2009 - 4:13pm
QUEST Vol. 16, No. 2
Letters to Quest: Camp is so important ** Moms on Wheels ** All camps not the same ** No guarantees (life expectancy) ** FMLA and sibling caregivers ** Pay for family caregivers.
posted on January 1, 2009 - 9:34am
QUEST Vol. 16, No. 1
Through history, many a young man has gone to sea seeking adventure, so it came as no surprise when the Williams brothers decided to take on the challenges of the sea.