Alberta MP mourning newborn daughter’s death from genetic disorder

The infant was diagnosed with Trisomy 13 at birth

Tom Kmiec and his wife Evangeline with their newborn baby, Lucy-Rose.

CALGARY — An Alberta Conservative MP has posted a touching online tribute following the death of his newborn daughter from a genetic disorder.

Tom Kmiec, who represents the riding of Calgary Shepard, says in a Facebook post that he and his wife Evangeline said goodbye Monday to Lucy-Rose, 39 days after she was born.

Kmiec says the girl was diagnosed with Trisomy 13 shortly after birth, and that she was only able to spend a week with her family at home.

He says as an MP, he often rises in Parliament to congratulate fellow Calgarians for a post-secondary degree, a medal, or recognition for service to the community.

He says his daughter never had the chance to achieve those milestones, but notes she achieved success by bringing incredible warmth to other family members.

Kmiec says she was able to mature her older siblings into responsible caretakers without a spoken word.

“Too often we prize a long life of achievements over a life well-lived filling the hearts of those around us with warmth, empathy and compassion,” Kmiec wrote in the post.

“This experience has been soul crushing for us but through our grief, there has been so many that have helped us and lifted us up — for that, we will be eternally grateful.”

Trisomy 13, which is also called Patau syndrome, is a genetic disorder in which a person has three copies — instead of the usual two — of genetic material from chromosome 13 in all the cells of their body.

It leads to multiple malformations and health problems and children born with it often don’t survive beyond childhood.

Kmiec thanked friends and members of their church for their support, as well as staff at Alberta Children’s Hospital and the South Health Campus Hospital.

He said he will take time away from his parliamentary duties for the next few weeks and will be absent from the Conservative Party’s national convention in Halifax next week.

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