The Owens’

This past Tuesday, I got an assignment to photograph two families in Sturgeon. Both have small children with severe medical conditions, and one, 6-month-old Averi Owens, has a very rare and incurable genetic disorder.

I called Amber, Averi’s mom, the day before and asked if I could come over and hang out a little bit before our reporter, Jodie Jackson, Jr., arrived to interview. I was there for a couple of hours, chatting with Amber and the hospice nurse, making faces at Averi and making photos. I’m grateful for how immediately open the family was with me, and I’d be lying if I said little Averi didn’t tug at my heart.

Amber, 29, left, looks at her 6-month-old daughter, Averi, at their home in Sturgeon. Averi was born with a rare, incurable and terminal genetic disorder, and may not see her first birthday. Before having Averi, Amber and her husband, Billy, had a son, Parker, who was diagnosed with the same disorder. “This time around, I kept asking ‘Why? Why again?’” Amber said. “This has tested my faith.”

Hospice nurse Debbie Williams plays with Averi’s hand.

Amber plays with Averi after suctioning liquids out of her mouth. Averi’s disorder primarily affects brain development, but also affects Averi’s ability to eat, suck or swallow. Because of this, Averi must have excess liquids removed from her mouth to avoid pulmonary aspiration.

A small image depicting Jesus Christ hangs on the wall inside the Owens’ Sturgeon home.

Amber wraps her arms around Averi.

Amber Owens, 29, gives Averi a kiss on the cheek.

Amber gives Averi an IV drug before putting her to bed. Because of her disorder, Averi suffers from seizures, which she is given drugs to help repress.

Jodie wrote a really great story about the Owens and another family, the Halliburtons. Well worth a read.