A routine surgery to correct a flat foot on a fifth-grader turned into a medical discovery that would turn the lives of the Custer Baker student and his family upside down.
The bones in the feet of Evin King, 11, were very soft — in fact, the doctor doing his surgery compared cutting into the bones to taking a knife to a stick of butter.
After many scans and blood tests, the King family of Franklin, got a diagnosis for Evin’s condition: a bone condition called hypophosphatasia, or HPP. The condition creates abnormally developed bones through defective mineralization, which is the process by which bones and teeth absorb minerals such as calcium and phosphorus.
“(His bones) are not hardening, so even if he were to take calcium or drink extra milk, it wouldn’t set up in his bones, in fact it would do more damage because it would set up in his organs,” Evin’s dad, Robbie King, said. “There is not a cure for this.”
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Evin’s two siblings, Isaac, 16, and Grace, 13, do not have any similar genetic disease.
Although Evin was born with the condition, the diagnosis and learning about the disease made events of the past come into perspective for Robbie and Evin’s mom, Vikki, who is a nurse. For example, unexplained respiratory conditions he had when he was younger are common with the disease.
A new medication has just been approved by the FDA to control breaking bones, but the medicine costs almost $200,000 per year, and it isn’t approved for use unless someone has broken a bone — and Evin never has.
A specialist at Vanderbilt University in Tennessee would like to take Evin on as a patient, but the Kings are still awaiting approval from their insurance company to see if they’d be allowed to put Evin under his care.
Evin is an active kid who loves to play outside and ride his bike, but he’s had to curb some of his favorite activities, such as jumping on trampolines, since his condition was discovered, his family said.
Robbie said Evin does have a lot of pain in his legs, and had a hard time recovering from the surgery, which took place in July.
“He had a terrible time healing from his surgery. I think the disease had a lot to do with it. He had a rough transition from Creekside Elementary School to Custer Baker this year because of having to use a wheelchair for several weeks and ongoing issues with his feet healing,” Robbie said.
The disease causes inflammation, which may have contributed to an overnight stay at Riley Hospital for Children at Indiana University Health for an appendectomy.
“The poor little guy has been through a lot,” Robbie King said.
For now, the family is trying to find ways to accommodate Evin’s now-known condition.
“He loves to go to Skyzone (an indoor trampoline park), so we’ve had to come up with some alternative ways to help him keep active and not sitting around playing video games too much.
“We recently met with the school and went through this, and educated them on what we knew. His teacher is doing research to try to learn more about it.”
Explaining the condition was very hard at first for Robbie and Vikki. Evin’s first question was whether he was going to die.
“We told him, no you’re not going to die from this,” Robbie said, balancing the effort to be positive with helping him understand the reality of the condition. Evin may have to use a wheelchair permanently one day, he added.
“His demeanor is fine. He’s an upbeat, positive kid. He had some questions at the beginning, but he’s not really letting it get him down. We made a T-shirt for him that he was excited about.”
The shirt says, “Always in Rare Form,” and has some bone on the sleeves and on the shirt, so if someone would ask him about his shirt, he could tell them that he has a rare genetic disease that causes soft bones.
Evin said he still gets outside to play at recess, he sometimes uses a knee scooter to get around, and his friends are understanding about what’s going on with him.
“I’ve always had the condition,” he said. “I was born with it. I let them know you can break bones easily and you have to sit down a lot, sometimes you don’t get to go out and play a lot.”