NRL News

Emily Norris has a genetic condition so rare it has no name, but her parents unconditionally rejected suggestion she be aborted

by | Jan 8, 2020

By Dave Andrusko

Emily Norris, who has become a karate champion despite being born with a lung malformation that meant she had to have her right kidney and 70% of her right lung removed.
Photo: Chris Radburn/PA Wire

Emily Norris, now seven, was born with a condition so rare it literally does not have a name. Whatever it might be, Emily is thought to be among only 13 people in the world to have the genetic condition.

That lack of diagnostic precision did not stop doctors from advising her mother, Nicol Nicholls, to consider an abortion when a lung malformation was spotted when Nicholls was 20 weeks pregnant.

“Doctors didn’t have the chance to influence our decision because as soon as they mentioned abortion we shot it down, as it was not something we’d ever consider,” Nicol told Faima Bakar of “And thank God we didn’t, as she’s doing really well now.”

While Emily is now doing so well she has attained a Red Belt in Karate, it’s been a long and complicated haul for the youngster of Norwich, a city in Norfolk, England.

Her 31-year-old mom told Bakar that Emily had a “miswritten” gene assocated with lung and kidney problems. “Common factors with other cases are small stature, failure to grow and low weight gain – meaning Emily needed a feeding tube for her first few years,” Bakar explained.

On top of that

Emily’s right lung was made up of cysts due to a condition called congenital cystic adenomatoid malformation, and 70% of it was removed before her first birthday. Doctors then discovered she had a multicystic dysplastic kidney which was removed when she was three.

Through all that Emily just keeps on keeping on, including winning a medal at her first karate competition.

“I don’t know what the future holds for Emily,” Mrs. Nicholls told Lauren Cope, “as not much is known about her genetic condition, but one thing we do know is that she has always been a fighter.”

Categories: Infants