Mum with rare genetic disorder adopts four children with the same disorder
Kristi Smith, from Arizona, has lived her whole life with a genetic disorder called Phenylketonuria (PKU)- meaning that her body cannot process a specific type of protein, phenylalanine.
Wanting to have children, she and her husband Matt, were told that her disorder could lead to complications during pregnancy- including fetal birth defects.
Deciding not to risk it, the couple decide to adopt. While researching their options for overseas adoptions, they discovered how difficult it was for children in China with PKU.
"The treatment is far too expensive in China and they don’t have insurance," Matt Smith explained talking to Inside Edition. “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.'"
People with PKU,have to have an extremely low protein diet and need special protein formulas without phenylalanine to get their daily dosage.
Working through an adoption agency, the couple found two boys, both aged 2, in China with PKU.
Luckily, they were in an orphanage that understood the complex needs to PKU, not a lot of children with the disorder had the same good fortune.
The new family were just settling into their life when Kirsti heard about two other boys- ages 8 and 13.
The 13-year-old had not had his PKU teated properly and was suffering the consequences, including intellectual disabilities, seizures and behavioural and mental issues. To make matters worse, he was becoming too old for the orphanage that housed him.
"It seems like those kids just hit the street if they're not adopted," Matt said.
Matt said that it was a lot of effort raising the boys, but that it was worth it.
“I feel like at home, we are always preparing the next meal. We have to count everything."
The eldest child, Ben, who suffered damage due to his previously poor diet is also adjusting well to his new life.
“Life has been so much fun. Just watching these boys blossom."