Rare gene impacts family twice

ANCHORAGE, Alaska (KTUU) - A former Alaska family is facing another battle with a rare genetic mutation.

Tanisha Mitchell and her fiancé, Jeremy Miller, welcomed a baby girl in September who they say inherited the Surfactant Protein B (SP-B) deficiency gene. It is the same gene that her son Jonah was born with and died from in 2022, Mitchell told Alaska’s News Source.

“ANMC [Alaska Native Medical Center] told us...they only seen like one baby in 25 years that had this gene and that was Jonah,” Mitchell said.

According to the National Organization of Rare Disorders, this is a rare inherited disorder that can lead to interstitial lung disease. The organization adds that symptoms linked to it typically develop within hours of being born and can lead to fatal respiratory failure within six months.

According to Mitchell, Jonah died days before turning two months old while waiting for a lung transplant.

Following Jonah’s death, the family relocated almost two years ago. It was in Florida, where Mitchell’s and Miller’s second daughter, Ariah, was born and diagnosed with the same genetic condition.

“She was born with respiratory problems, breathing problems,” Mitchell said. “As soon as she was born, they took her to the NICU. I only held her once since she was born. It’s pretty hard … I wish she was a healthy baby girl, you know, and can come home with us."

According to Mitchell, Ariah is currently receiving artificial surfactant protein B to maintain her breathing, and she is sedated to keep her oxygen levels normal.

“The baby’s under evaluation right now, getting ready to be on the donor list. We don’t know how long it’s going to be. It could be three months to two years. Just exact same thing as Jonah,” Mitchell said. “A lot is going through my head. This gene is so rare and like two of my babies have this.

“It’s pretty, pretty crazy and something I just, I don’t understand.”

Since learning about the genetic mutation in 2022, the family told Alaska’s News Source that there remains no cure for the gene. Mitchell added that Miller’s side of the family does have a history of respiratory problems.

Despite the gene running in the family, the family welcomed a healthy baby girl named Joanna in 2023.

“She’s a little bundle of joy for our family and we’ve been super happy to raise her,” Mitchell said.

Prior to Ariah’s birth, Mitchell also notes that she did consider testing for the genetic mutation.

“We talked to the doctors about having a test done before this, but I was already too far into my pregnancy to get the test done,” Mitchell said. “It was either, you know, have the baby and figure it all out ourselves. Unfortunately, that’s exactly what happened.”

Right now, Mitchell said, they are praying and awaiting the next steps.

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