Mother With Rare Genetic Disorder Adopts 4 Children With Same Condition

The Smith Family
The Smith Family

She figured they already had to live the lifestyle anyway.

An Arizona mother who was born with a rare genetic disorder has adopted four children with the same condition.

Kristi Smith, 36, was born with Phenylketonuria (PKU), a metabolic disorder that leaves the body unable to process a specific protein, phenylalanine.

She's always wanted to have children as well as adopt, but once she realized the babies could suffer complications like fetal birth defects because of her condition, she and her husband, Matt, decided against it.

Instead, they began researching adoption and found how difficult it is for children with PKU in China.

"The treatment is far too expensive in China and they don’t have insurance," Matt Smith told “Most of the kids with PKU are abandoned. So when we saw that, we were like, 'We can take care of that — we live that life at home.'"

Even in certain states in America, families have difficulty obtaining insurance coverage for the necessary medical foods and formulas needed to help with the disorder.

People with PKU must be on a low-protein diet and drink special protein formulas, without phenylalanine, to get their daily intake.

Through an adoption agency, the couple found two boys in China, both 2 years old, that had PKU.

In May 2015, the Smiths brought their sons, Andrew and Luke, home from the Chinese orphanage.

Thankfully, the boys were at an orphanage that understood PKU, because the disorder, if not cared for properly, can cause intellectual disabilities, seizures and behavioral and mental issues.

The family was settling into their lifestyle when Kristi Smith came across another 8-year-old boy with PKU who she was interested in adopting.

She also saw the story of a 13-year-old, whose PKU had been left untreated, and he was approaching an age considered too old for the orphanage in which he was living.

"It seems like those kids just hit the street if they're not adopted," said Matt Smith.

So the Smiths began the process of adopting them both. The boys, Caleb, now 9, and Ben, 14, came to the U.S. last month.

Matt Smith said it’s a lot of work, but it’s worth it.

“I feel like at home, we are always preparing the next meal,” Smith said. "We have to count everything."

The eldest child, Ben, who has suffered damage as a result of not being on the proper diet beforehand, is slowly adjusting.

“Life has been so much fun. Just watching these boys blossom," Smith said.