We’ve all heard the phrase “one in a million.” Usually it’s just a turn of phrase, but once in a while it’s more literal, like with one Sioux Falls boy.
Josten has Glanzmann thrombasthenia, a bleeding disorder. He’s a Children’s Miracle Network kid, and on Monday night KELOLAND News had an opportunity to meet him and his parents.
The now five-year-old Josten was diagnosed at four months old.
“We kind of knew something was a little off when he was born,” Josten’s mother Shalaine Rostomily said. “He was bruised head to toe, he was spitting up blood when we brought him home, so there was just several indications. We were very happy when he was diagnosed because we had an answer as to what was going on but we also knew that it was a life-long journey of questions and what ifs and how are we going to handle this, and what does, what is his life going to look like.”
“We have to be a little bit more careful with him, just the activities he does, we have to be a little bit more careful with if he’s involved in sports,” Josten’s father Jason Rostomily said. “We got to take some more precautions.”
Josten bruises easily. His disorder is exceedingly rare- about one out of every million people has it.
“We are sometimes asked by doctors how many bruises does he have, and his answer is ‘thousand,’ all the time,” Shalaine Rostomily said. “He’s typically covered from head to toe, which gets a little difficult emotionally and mentally for him when we’re out in the public and just other people looking at our family.”
Children’s Miracle Network has supported Josten and the challenges he has.
“They have helped us out,” Jason Rostomily said. “When he was learning to walk, they helped us out with like padded helmets so we didn’t have to worry so much about him banging his head with a fall in our house, or even outside on sidewalk.”
So this little guy with big plans can, for now, be a kid.
“He is very bright,” Jason Rostomily said. “He is going to be, he keeps telling us, he’s going to be an artist when he grows up, and a greatest showman when he grows up, and he wants to be a scientist like his doctor when he grows up.”
You can see other stories like Josten’s on our upcoming Children’s Miracle Network special airing on August 14.