"Lila's Law" Facing the Senate

Lila’s Law will face a Senate committee tomorrow. We have to prove why this bill should be supported. Want to know why some people think Lila should not be able to get a transplant?

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Some say Lila has no quality of life and no expectation of living a long, fulfilled life. They say others without disabilities are more deserving. In my opinion Lila’s life is no less valuable than others, and she has a great quality of life. I think her life is not that different from a 7 year old girl without Down syndrome; she just has to work harder. She is healthy and loved. People with Down syndrome grow up, get married, get jobs, and contribute to their communities. The life expectancy average is 60 years old.

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In 1982 and for many years before, babies with Down syndrome were starved from birth. Years later they were denied life-saving surgeries. Both of these things were considered care that people with Down syndrome did not deserve because of these same arguments as above. People fought for their rights, changes were made in laws, and the average life expectancy of a person with Down syndrome has risen.

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Lila’s heart would have leaked blood until her lungs turned “stone-like” without treatment. She faced a long-suffering death. Now she is a thriving 7 year old who, thank God, did not end up needing a transplant.

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Organ transplant discrimination is just another one of those things people are wrong about that needs to change.

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One of the biggest challenges people with Down syndrome face is breaking the assumptions and stereotypes that exist about their diagnosis.

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Lila was blocked from even being considered for organ transplant criteria. I’ve done a lot of research on the strict criteria that transplant teams must consider, a difficult process for even the healthiest people, but she didn’t even get that far. Lila’s Law ensures that people with disabilities will not be discouraged from applying or denied a transplant based on their disability alone.

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The bill will be run in the Senate Public Health committee tomorrow.

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I need your help to make a big change in our state.

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Spread the word! SB 155 is now Act 837!! This law: • protects people with disabilities from organ transplant discrimination • requires providers to give reasonable accommodations needed to help people