A 4-month-old from the Kalamazoo area is one of only a few in the world with a rare condition similar to the one that recently took the life of British baby Charlie Gard.
Russell Cruzan III’s parents are fighting to find him treatment that could save his life. Even though doctors say Russell’s chances of survival are slim, his parents are hoping he’ll defy the odds.
Held by his mother in his Texas Township home Monday, Russell’s breathing was labored.
“It’s really hard to be told that your child’s chances of even making it to 2 are like 50 percent,” his mother, Michelle Budnick-Nap, said tearfully.
She and Russell’s father noticed something was wrong in early June.
“(We) kept asking the nurses why. Why is he not eating? Why isn’t he thriving?” Budnik-Nap recalled.
There were no answers. And Russell kept getting worse. Dehydrated and lethargic with a low body temperature, he was admitted to Bronson Children’s Hospital for a week.
Doctors treated the symptoms, but Russell’s parents say they weren’t ever given a reason why their child was sick.
Two days after Russell was released, his parents rushed him back to the hospital when he started having severe respiratory problems and then developed pneumonia. Russell was in the hospital for a month.
Still, no answers.
Until a test on his kidneys came back.
“When those labs came back the doctor called and she was like, ‘You need to bring him into the hospital right now. His labs are looking kind of crazy. We need to find out what’s going on,'” Budnik-Nap said.
The diagnosis was mitochondrial DNA depletion syndrome 13, which can cause a loss of muscle mobility and strength, decreased kidney function and an inability to swallow.
Charlie Gard also had mitochondrial depletion syndrome…
After Russell’s diagnosis, doctors told his parents the the odds were against him.
“‘We know the seriousness of this diagnosis. We know what the prognosis is. Do you want to keep fighting or do you want to give up and let nature take its course?'” Burdik-Nap said she was told. “Which is a really, really hard thing to hear. But I always tell them, ‘Bo, we want to do everything we can. We want to fight.'”
That’s why she and Russell’s father are working to get to Boston.
“If anything if they can’t save him or whatever — maybe he can be used to save kids in the future,” Russell Cruzan II said.
They say a doctor at Boston Children’s Hospital, who is one of the top mitochondrial physicians in the country, has agreed to treat Russell if a doctor at Bronson can get the insurance company will authorize it. If Russell goes to Boston, he would get a treatment aimed at helping his healthy mitochondria replicate.
“I don’t want to say that we’ve come to terms with it. We love him more than anything in the world,” Budnik-Nap said.
They may be able to get treatment for their son, but insurance isn’t covering the costs. A YouCaring page has been set up to help cover medical costs.