Chronic Desperation
There's a lengthy news item about a family of French-Canadian derivation living near Pembroke, Ontario in an old inadequate bungalow situated on a small bay off the Indian River.
This is a family truly plagued by a recessive gene that ensures a large percentage of the offspring have succumbed to muscular dystrophy. One of the siblings, now a grandmother herself, and the owner along with her husband of the little house, has undertaken the arduous work involved in caring for two of her ailing brothers, and an afflicted nephew.
She also looks after a sister who lives elsewhere, independently, but who is so ill with the muscle-wasting disease that it would appear she too will be moving in with her sister, adding to the care of the home's inhabitants. To make matters worse, the old house is crumbling into decay.
The owners have scant disposable income to pay for needed upgrades. The house is given to flooding, sometimes severely, in concert with the time of year and weather conditions.
There were originally ten children born to area farmers, Doria and Lida Corriveau. Both hard-working people, the mother of the children succumbed to weak muscles as she became older, and when her children began falling ill, genetic testing was conducted, confirming that they had myotonic dystrophy.
As they became ill, their muscles wasting progressively, they attempted to live independently or in group homes for the disabled. But as their conditions became more severe, they were invited by their sister to live with her, where she devoted herself to their daily care, an onerous, never-ending duty, leaving her no time for herself, no time off for vacations, as their surrogate mother and nurse.
Two are is confined to wheelchairs, all suffer chronic weakness, one with the addition of heart disease. They receive disability pensions, enabling the family to pool inadequate resources. The husband of the sister who gives constant care to her siblings is himself ill with a severe but unrelated condition, and on a disability pension.
The sister in good health who dedicates herself to the well-being and care of her siblings describes her daily duties as inclusive of the preparation of meals, laundering, house cleaning, caring during sickness, escorting to medical appointments or hospitals, wheeling chairs to walking distance venues, and generally seeing to her charges' everyday constant needs.
The mother of these ten children herself had fifteen siblings, many of whom suffered from a debilitating illness they never understood. The familial inheritance of muscular dystrophy had never been diagnosed, the family claims never to have been informed, although it remained evident to them all that something was horribly wrong with many members of their immediate family.
Two generations totalling 25 individuals, with a high proportion of chronically ill people, gradually degenerating into a physical condition of desperate incapacity. Might they have taken this as normal? Never had the curiosity to attempt to understand what exactly was bedevilling their families' health?
Continuing to bear children without attempting to understand what was befalling them? Making themselves helpless to organize their own destiny, bringing into the world other children whom genetic inheritance would likewise strike down with physical incapacitation, helplessness and early death?
This is a family truly plagued by a recessive gene that ensures a large percentage of the offspring have succumbed to muscular dystrophy. One of the siblings, now a grandmother herself, and the owner along with her husband of the little house, has undertaken the arduous work involved in caring for two of her ailing brothers, and an afflicted nephew.
She also looks after a sister who lives elsewhere, independently, but who is so ill with the muscle-wasting disease that it would appear she too will be moving in with her sister, adding to the care of the home's inhabitants. To make matters worse, the old house is crumbling into decay.
The owners have scant disposable income to pay for needed upgrades. The house is given to flooding, sometimes severely, in concert with the time of year and weather conditions.
There were originally ten children born to area farmers, Doria and Lida Corriveau. Both hard-working people, the mother of the children succumbed to weak muscles as she became older, and when her children began falling ill, genetic testing was conducted, confirming that they had myotonic dystrophy.
As they became ill, their muscles wasting progressively, they attempted to live independently or in group homes for the disabled. But as their conditions became more severe, they were invited by their sister to live with her, where she devoted herself to their daily care, an onerous, never-ending duty, leaving her no time for herself, no time off for vacations, as their surrogate mother and nurse.
Two are is confined to wheelchairs, all suffer chronic weakness, one with the addition of heart disease. They receive disability pensions, enabling the family to pool inadequate resources. The husband of the sister who gives constant care to her siblings is himself ill with a severe but unrelated condition, and on a disability pension.
The sister in good health who dedicates herself to the well-being and care of her siblings describes her daily duties as inclusive of the preparation of meals, laundering, house cleaning, caring during sickness, escorting to medical appointments or hospitals, wheeling chairs to walking distance venues, and generally seeing to her charges' everyday constant needs.
The mother of these ten children herself had fifteen siblings, many of whom suffered from a debilitating illness they never understood. The familial inheritance of muscular dystrophy had never been diagnosed, the family claims never to have been informed, although it remained evident to them all that something was horribly wrong with many members of their immediate family.
Two generations totalling 25 individuals, with a high proportion of chronically ill people, gradually degenerating into a physical condition of desperate incapacity. Might they have taken this as normal? Never had the curiosity to attempt to understand what exactly was bedevilling their families' health?
Continuing to bear children without attempting to understand what was befalling them? Making themselves helpless to organize their own destiny, bringing into the world other children whom genetic inheritance would likewise strike down with physical incapacitation, helplessness and early death?
Labels: Health, Realities, Social-Cultural Deviations
posted by Pieface @ 7:18 PM
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