“Luke was a perfectly normal, beautiful baby boy,” remembered Sara. “We brought him home from the hospital and were so excited about this little bundle of joy. Then, nine days later we got ‘the call’ that runied it all.”
“The call” was from the hospital, letting Sara and husband Adam know their son had tested positive on the screening for PKU. PKU is rare – only about one in every 15,000 babies born in the United States have PKU. When Luke was diagnosed, he was the first in North Dakota in five years.
“It took us months to really come to terms with what life would be like for our son,” said Sara. “Luke’s body is unable to break down one of the amino acids that make up all foods that contain protein. Intellectual disabilities and a host of other medical problems result from failure to follow a very strict diet that limits protein intake. In other words, our son’s future was totally in our hands.”
Knowing that, sparked Sara into action. As a Family and Consumer Science (FACS) teacher, she knows a lot about nutrition. That knowledge base made her son’s restrictive diet easy to understand.
“Luke has never sat down at the table and eaten the exact same thing as everyone else, at home or at school. We do our best to make sure he has at least a part of or something comparable to what everyone else is having, but it is always different. But he has never known anything different,” explained Sara. “He is a remarkable kid. Even though, it is very frustrating for him, especially now he is in middle school, it is not the end of the world. We have lived in the same town his whole life, so the kids at school grew up with him and understand that is just how Luke is.”
Because both Sara and Adam carry the recessive gene that causes PKU, all of their children have a 25 percent chance of having PKU. Still, the couple decided to have another baby.
“Adam and I felt we had a good handle on the PKU and that it was important for Luke to have a sibling,” she said. “We were strongly encouraged to have prenatal testing done to see if our new baby would also have PKU, but we turned down all the tests.”
Three years later, Levi was born.
“It was a very stressful birth. I sensed something was wrong right away because everyone in the delivery room was very serious and things were moving very quickly. When we got back to the room, the doctor and nurses told us that our son had many of the indicators that pointed to having Down syndrome,” said Sara. “We were crushed, to say the least. It was a roller coaster of emotions after that. I had a very difficult time with the diagnosis initially and Adam coped relatively well at first. Then I came to grip with it and Adam sort of fell apart. Luke, who was almost three at the time, was our rock. He just couldn’t really see anything wrong with his baby brother and didn’t understand why mom and dad were crying all the time. He was our wake up call to get over it and move on.”
So that’s exactly what they did. The couple realized Luke had been great training for Levi. After spending so much time researching PKU and worrying about Luke, they took a different approach to Levi.
“We just made up our mind we were going to enjoy our baby more and stress less,” she said.
And they did, until January 2010, when the family once again got devastating news. Levi hadn’t been feeling well for months, and went to the doctor for a rash and a fever. Their family doctor recognized the rash was not really a rash, but rather petechiae, a cluster of spots that result from a minor hemorrhage. The signs were pointing toward leukemia. They headed to Bismarck, and the next day, Levi and Sara flew to University of Minnesota to start treatment.
Levi responded very well to treatment, but his Down syndrome diagnosis added a few hurdles a regular child wouldn’t experience. Although his leukemia cells went away very rapidly, his counts bottomed out just as fast and he acquired meningitis a couple weeks into treatment.
Levi spent 40 days in Minneapolis, then continued treatment for three and a half years in Bismarck, closer to their home in Bowman, ND. Levi took his last dose of chemo medication on April 10, 2012, also Luke’s tenth birthday. But as one chapter of their story was ending, another was just beginning.
“Luke started walking with a very unusual limp. He had always been an active kid,” said Sara. “Luke loves sports. He would run and run at recess but limp when he walked. It was very unusual.”
An x-ray showed a problem with the top of Luke’s femur, and he was diagnosed with Legg-Calve Perthes disease. Legg-Calve Perthes occurs when the blood supply is temporarily interrupted to the ball part of the hip joint. Without proper blood flow, the bone begins to die. For Luke, that meant surgery, followed by 16 months on crutches, then another year with limited activity, and finally, another surgery. Luke remains on limited movement.
Kordovsky is quick to point out that Perthes is rare, and there is no connection between Perthes and PKU. But Perthes has been life changing for the entire family.
“Perthes was an eye opener for Luke. PKU and the strict diet associated with it are nothing to Luke compared to losing his ability to run and play.”
The lessons for the rest of the family have come in waves over the years.
“Our life has been one eye-opening experience after another. We don’t feel sorry for ourselves, because we know, as bad as we think our lives are, things could always be worse,” said Sara. “We are blessed to live where we do. Our state has some monetary resources that keep a lot of programs going to assist families with special needs children. Luke’s PKU was diagnosed because of state-mandated testing. There is assistance to help pay for Luke’s food and for Levi’s care. The blessings are not just financial though. We have wonderful people in our lives, and they’ve made raising these two very special little boys so much easier”
Now 12 years into her role as mom to children with special needs, Sara can finally take a breath, and look back at what has worked for them over the years, and offer advice to others in similar situations.
“Kids with special needs, just like all kids, need to be loved,” said Sara. “Spend meaningful time with them, read to them, feed them healthy food, encourage them to play, stay current on medical check-ups, provide assistance if they struggle, advocate for their rights. Just be there for them.”
Sara has continued working full time as a teacher, despite her boys’ health issues. For her, work is a good distraction. Equally important, Sara says, is time alone with Adam. She says they learned early on in their journey the importance of couple time, so they make date night a priority. Family time is key too; their best family time is spent camping. Camping is something they can all do, and they all enjoy.
“Lots of problems disappear simply by sitting in a lawn chair and watching a kid splash around in the lake,” said Sara.
And while Sara’s life as a mom has been anything but typical, and nothing like she dreamed, she knows this life with her two very special little boys is exactly how it should be.