Clock ticking on Edmonton family's hope for $2.8 million drug treatment for toddler son

CBC News

 3 July 2020 - Family hoping Alberta Health will pay for new drug that must be administered by mid-July.

Kaysen Martin has a machine to help him breathe while asleep, another to help him cough, and every four months, the wheelchair-bound tyke heads to the hospital to have a drug injected into his spine.

Now almost two, Kaysen was diagnosed at eight months with spinal muscular atrophy, a motor neuron disease found in one in 6,000 babies that affects the voluntary muscles used for lung support, swallowing, crawling, walking and head control. Most children with the Type 1 version affecting Kaysen don't live past age two.

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Michael Wonder

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Michael Wonder