Glenn Ferrell of Boise, Idaho, has plenty of experience on how disability affects families. His fourth child, Noah, was born with Down Syndrome, and his first wife, Barbara, died from Huntington’s disease.
As for Noah, ‘my wife was thirty-nine when he was born,’ said 57-year-old Ferrell in a telephone interview. ‘And we didn’t find out (about the Down syndrome) until the day he was born.’
Down syndrome is caused by a defective embryo cell division creating an extra No. 21 chromosome. Affecting 350,000 Americans, it is the nation’s leading cause of mental retardation.
The Ferrells were concerned early on about Noah’s development. He weighed only nine pounds after eighteen months, couldn’t walk until age three, had slurred speech and wasn’t potty-trained until seven.
With all his physical challenges, ‘there was still a joy about having him around,’ said Ferrell of the early years. He and his wife home-schooled Noah and his three siblings, and by having Noah around ‘his siblings learned a great deal about compassion and about people who were different.’
As Noah grew, Barbara Ferrell developed Huntington’s disease. A National Institutes of Health website calls Huntington’s a ‘genetically programmed degeneration of brain cells.’ The degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbances.
Said Ferrell, ‘Barbara wasn’t able to walk the last three years of her life and used a cane several years before that. She lost the ability to speak clearly those last years. In the last year she lost control of her bodily functions before wasting away to seventy-five pounds.’ She died at age fifty-five, just four years ago.
The death greatly affected Noah. ‘He observed (his mother dying) at home and wasn’t able to articulate what was going on,’ said Ferrell. ‘I often found him crying alone in a corner. From then on he began talking a great deal about death, which he’d never done before. He even became sensitive to the death of pets. Occasionally even today I will find him looking at her picture, or while riding down the road he will say he misses his mom and begin to cry.’
Noah was sixteen when his mother died. Ferrell, the pastor of a church, eventually remarried and moved from eastern Kentucky to Idaho, in part so Noah could have certain social services. Noah and his new mother get along fabulously.