Life-saving treatment for infants with Spinal Muscular Atrophy now!

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Dear Health Minister Taylor, please help babies fighting spinal muscular atrophy!

Most of us have children we love in our lives, whether it be your own kids, nephews, nieces, cousins, etc. Now imagine them being 2 months old with feeding tubes because they are no longer strong enough to swallow and breath at the same time. Imagine they cannot move their arms or legs, cannot hold their heads up, and cannot breathe without help. They look at you with innocent trusting eyes and don’t even know how strong and brave they are being.

This is the reality for children with Spinal Muscular Atrophy (SMA).

When Eva was born everything seemed perfect but after two weeks, things began to change. Although she was still alert and smiley, she had lost almost all strength in her arms and legs. They soon got the devastating news that their baby girl was fighting a very serious, rare disease that would cut her life extremely short.

But today there is hope for Eva and children who suffer with SMA with a life-saving one-time dose gene therapy drug called Zolgensma — which halts the progression of the disease and preserves muscular function needed for children to survive.

But this drug is only approved in the United States and comes with a heavy price tag of $2.1 million (USD).

How can we stand by and watch babies die one day at a time and not help them? Parents feel helpless and cannot afford the $2.1 million drug. Parents need your help to keep their babies alive!

As strong and as much as communities try to rally together to help these families, $2.1 million is an impossible task!

With each day that passes without treatment, motor neuron cells become weaker and weaker and eventually die — please sign this petition to let our government know that Canadian babies with SMA need Zolgensma in Canada NOW!