Archives par étiquette : family crises

BC Empty Gifts like Empty Promises: ACORN Members Rally for Disability Rights

ACORN Canada | December 29, 2014

In British Columbia, single parents on income and disability assistance have every dollar of their monthly child support payments clawed back from their assistance cheques. Since 2013, BC ACORN members have been campaigning tirelessly to get the government to end this controversial policy, and after over a year of consulting with organizations, families, parents, and other stakeholders, on December 10, 2014 the government requested yet further consultations before making any decision on the matter.

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Caring for Kyram: Dad of severely disabled boy pleads for help

Ottawa Citizen | December 19, 2014, Written by Sonia Mendes

“Kyram requires care 24 hours a day to ensure his survival,” says his dad Myles Dear, whose son was born four months premature and has cerebral palsy.  At night, a trained nurse sits at his bedside and a disability support worker is with him during the day.

Quality professional care for children with severe disabilities comes with a high price tag, but only a portion of Kyram’s long-term needs are currently being funded by the Ontario government. The difference, which Dear has calculated to $65,000 per year, must be paid out of his own pocket.

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19-12-2014 11-16-07 AM

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Caring for baby Kelel

Smithers Interior News | December 15, 2014, Written by Chris Gareau

Four-month-old Kelel’s home has been turned into a triage centre. Equipment just to keep the boy named after Superman breathing and feeding fills the Smithers home dad Joe Bramsleven describes as a “bubble,” quarantined from illnesses from visitors that would be fatal.

Kelel has a rare genetic disorder: spinal muscular atrophy (SMA). He has Type 1, the harshest diagnosis that carries with it a life expectancy of one to two years. Survival beyond the third year is very rare. It takes 24-hour care to keep Kelel alive.

[Read the full story here]

Kelel with his big brother Dominick. Kelel has already been medevaced four times. - Contibuted

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