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Mom fighting for son with Down syndrome to have equal transplant rights

Posted at 6:35 PM, Mar 02, 2020
and last updated 2020-03-03 08:57:03-05

LAS VEGAS (KTNV) — Rachael Anderson miscarried during her first pregnancy, so when she got pregnant soon after, she and her husband were overjoyed. Then, doctors told them their new baby had Down syndrome, many encouraging them to terminate the pregnancy, but they ignored that advice and had their baby boy, Caleb.

"When we met him we knew all was perfect in the world and we knew our little baby had this amazing fighting personality and that’s what he’s done, he’s fought over and over again," she said.

Caleb has endured many complications, spending the first eight months of his life in and out of the hospital. He has a heart problem and there's a chance he'll need surgery when he's a year old. According to Rachael, if Caleb needed a heart transplant tomorrow, he wouldn't be eligible.

There is a Federal ADA law that prohibits discrimination when determining if a person can receive an organ transplant, however those laws are not enforced in Nevada.

Twelve states in the U.S. have changed their laws to comply with the federal rules, but Nevada has not done that yet, so she's working to change that. She's created "Caleb's Law" and is working to find a senator to carry this law through the next legislative session.

"It just means protecting him and not changing him for the world but changing the world for him," said the mom on a mission.

The Down Syndrome Organization of Southern Nevada will have an event on March 21, which is World Down Syndrome Awareness Day. The public can attend to both get involved, and also see a ribbon cutting for a newly named building made possible by a recent donation.