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