My story

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My story

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Dear friends and supporters,

For years, a shadow loomed over me.

I feared a future of pain and suffering - where my disease would continue to worsen, but not kill me. Under Bill C-14, I was deemed ineligible for Medical Assistance in Dying (MAID) because I was considered a non-terminal patient without a “reasonably foreseeable” death.

After years of fighting, I received incredible news that the BC Supreme Court adjourned my case, after a government expert witness admitted that I would now qualify for MAID if I requested it.

The relief I feel is indescribable. If the time comes that my state of physical and mental suffering become intolerable, I will have the choice in how much I will endure.

Please consider donating to help expand access to MAID

I have lived with spinal muscular atrophy, a chronic degenerative disease, since birth and was diagnosed at 16 months. It affects every aspect of my life. Basic tasks are challenging and I rely on the physical care of others to get through the day.

My symptoms have been progressing, especially in the last three years, so I constantly have to adapt to new, tougher challenges. My hands and neck muscles fatigue rapidly; my contracted ligaments and tendons give me daily pain.

I have weak lung function that affects my ability to speak and swallow, especially since a frightening bout of pneumonia in 2017.

I started my case with the BCCLA three years ago. During that time, I continued to find joy and live a meaningful life. I married, traveled, worked, volunteered, wrote, and made art, surrounded by supportive family and friends that fill my world with light.

If I lose my ability to live my life and my state of physical and mental suffering becomes intolerable, I want to be able to choose how much suffering I will endure.

Now I have that choice. But there are many people who do not.

I am grateful that my case has helped clarify the law so that others like me will no longer feel trapped in intolerable suffering. Instead of fearing their future, they can have choice, agency, and peace.

-Julia Lamb

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