Local boy fights rare mitochondrial disease
Angela Kraft has been told many times that if she had not fought for her 9-year-old son, Zach, he would not be alive today.
“So many parents accept what the doctors say, but I wanted to know why,” the Ridgeville mother said.
Zach has mitochondrial disease, a debilitating genetic condition that leaves him with gastrointestinal problems and no energy, among other things. The mitochondria are the parts of the cell that produce 90 percent of the energy the body needs to function.
According to the United Mitochondrial Disease Foundation, 1,000-4,000 children in the United States are born with the disease each year.
Kraft said she hopes other parents will learn to “believe and fight for what you think is going on with your child’s body. ... If you feel there’s something wrong, push it.”
She also hopes that telling Zach’s story will bring awareness to this rare disease that took four years for his doctors to diagnose.
When Zach was in her womb, Kraft knew something was wrong. He did not move around as much as her first child, Peyton, her 11-year-old daughter.
And Kraft’s kidneys also had shut down.
“I just had this feeling,” she said.
Zach was born with a 103-degree fever. Less than an hour later, she and husband Curtis Langston were told to go home to plan their son’s funeral. But she couldn’t accept that. He spent 11 days in neonatal intensive care before being released.
Two months later, she found Zach blue and bleeding when she picked him up from his car seat.
Over the next four years, he would be misdiagnosed and sent from doctor to doctor. It causes many problems in other organs, such as the heart, brain, lungs and muscles, that may look like isolated issues but are caused by the disease.
At 6 months, Zach stopped eating. At 18 months, he had valve surgery to fix his reflux. That failed a week later. “They were always putting a Band-Aid on it,” Kraft said.
From the ages of 1 to 3, he would turn blue and fall. At 3, doctors put a feeding tube in his stomach. That didn’t work. At 4, he could wear the clothes of a 6-month-old baby.
Finally, Zach was started on TPN, or total parenteral nutrition, that supplies his body with nutrition directly into a vein in his chest. It was then that he started to grow.
It was only by chance that the Kraft family learned about mitochondrial disease. When Peyton was in the first grade, her teacher went home to New York for a family visit. She found the blog of a family friend with a rare disease and asked Kraft, who was an EMT, to read it with her to explain the medical terms.
“This was the scariest thing. This was Zach. That was the first time I had ever heard of mitochondrial disease,” Kraft said.
Zach was diagnosed at 4 with neurological and gastrointestinal mitochondrial disease. There is no cure, but Kraft said the diagnosis “gives them direction in how to treat Zach.”
They travel to Pittsburgh Children’s Hospital to see their doctor for regular checkups and treatments. There are only about 10 doctors in the country who know how to treat the condition. Zach takes 18 pills three times a day.
At 9, he has to ration his energy. This can be difficult for a boy who just wants to go outside to play with his pets. And they have a lot, including a miniature horse.
It’s not uncommon for him to fall asleep on the way outside because he does not have enough energy. He has never been able to go to school because of the energy problem. A teacher brings schoolwork to his home.
“It’s our way of life. It’s what we have to do,” Kraft said.
But Zach’s illness does not define him. He still antagonizes his big sister like little brothers do. And if you meet him, he will greet you with a warm smile and introduce you to his cat.
“He’s a happy child. He sees the positive in everything,” Kraft said. “I think he’s happy because I don’t cover up anything. He knows it’s terminal. When there are tests and surgeries, I let him know if it’s going to hurt.”
Zach’s illness isn’t the only challenge this family has had to overcome. About four years ago, Kraft had intercranial hypertension that caused vision and hearing loss. She has had nine surgeries to correct it.
And their last trip in January to the hospital in Pittsburgh was a nightmare.
Their flight was delayed because of snow, so they had to sleep on the floor of the airport.
The airline shipped his medical supplies to Charleston, but the family was delayed in Charlotte, so Kraft’s husband had to get the supplies and drive to Charlotte to pick them up.
A few days later, an electric water cooler caught their garage on fire. Zach was home with his grandmother, who lives with them, and was traumatized. He couldn’t sleep for days.
But despite all of the problems that come her way, Angela Kraft remains optimistic. She said Zach’s happy disposition makes things easier for them, and they’ve learned to be more accepting of their problems.
“I wouldn’t trade it. He’s taught me a lot,” Kraft said.
For information on mitochondrial disease, go to umdf.org.
Reach Jade McDuffie at 937-5560 or firstname.lastname@example.org.