Indiana family working with researchers to find cure for 2-year-old’s rare disorder

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SELMA, Ind. – A 2-year-old boy in Selma is one of 10 ever documented with a rare genetic disorder. The family is working with researchers around the world to find a cure in a race against time.

“My hope for Kameron, I wish that we could see a cure in our lifetime. I don’t know if that’s possible,” said Riley Children’s Hospital Pediatric Hematologist and Oncologist, Dr. Alex Lion DO, MPH.

He hopes 2-year-old Kameron Kadinger’s story will inspire others to find a cure. But the family feels they’re alone in this uphill battle.

“With the disease being as rare as it is there is not a lot of drive for research obviously so it feels like there is no help for us and we kind of have to do everything ourselves,” said Kameron’s father, Keith Kadinger.

This all started a little before Kameron’s first birthday during the summer of 2017.

“Kameron is developmentally about a six to seven month old. He can only sit with assistance, he cannot stand, he cannot crawl, he is non-verbal, he can have seizures, he can also have apneic spells to where he stops breathing,” said Kameron’s mother, Amanda Jordan.

His problems are due to a rare genetic disorder unlike any other known as “homozygous acute intermittent porphyria.” His parents have “heterozygous acute intermittent porphyria” but they’ve never been affected by it.

“We were told he had a progressive disorder and they just didn’t know what to do with us. So we left feeling pretty defeated with essentially a death sentence. And we started building his team from that moment on,” said Jordan.

Part of Kameron’s team includes Dr. Lion at Riley Hospital for Children. But his family has also been in contact with other researchers in New York, Ohio, North Carolina, and overseas.

“One of the reasons I chose to take on Kameron’s case is he needs an advocate,” said Dr. Lion.

But Dr. Lion wasn’t always a member of Kameron’s team. He became a part of Kameron’s journey after Dr. Grzegorz Nelepa passed last year unexpectedly. Dr. Nalepa was the only doctor willing to take on Kameron’s case in hopes of providing him with a better life.

Dr. Lion says Kameron is missing a molecule preventing his brain and red blood cells from working well, causing his nervous system to break down slowly over time.

In December 2017, with the assistance of Dr. Nelepa they agreed to give Kameron a liver transplant.

“They went to take him from me and I couldn’t. I couldn’t let him go. They had to take him from my arms. That was probably the hardest moment because there are no guarantees that he’ll survive the surgery,” said Jordan.

But he did, and the transplant made Kameron a new baby, but he still wasn’t cured.

“He went from being hazed to seeing you and he was there and there with you and he started smiling and looking at things. So if anything in that moment that’s when I believed it was the right decision,” said Jordan.

At that time, Jordan quit her job to be able to provide care for Kameron 24 hours a day and seven days a week. He was getting sicker more often, had daily therapy appointments sometimes multiple and monthly trips to Riley, leaving a lot of stress and pressure on Kameron’s father.

“It’s tough. I mean it’s tough. I work a lot. I probably work 70 hours-ish a week. But it’s worth it for Amanda to be available for Kameron 24 hours a day,” said Kadinger.

But now the family is working to bring researchers from around the world who can determine a better life for Kam.

“We have to pay for a day salary, for their flights, for room and board and at the end of the day whatever they come with we have to fund that research,” said Jordan.

It could cost upwards of $250,000 to get them here and not to mention even more money for research necessary for Kameron.

“I’m going to bring them in one room and I’m going to have them sit and talk about nothing but discuss Kameron. And at the end of the day, I want them to give me their best options of research ideas or ways to improve his quality of life,” said Jordan.

So far they’ve raised $50,000 through fundraisers and donations. But now they are hosting events to continue pushing toward their goal.

One hope for this family and Dr. Lion is that more researchers put more work and effort into those with rare diseases and disorders.

“I see that a lot of attention is given relatively to children with cancer. And I think that’s important because cancer is a very scary thing and something we don’t have cures for all the time. There are also these rare genetic diseases that are just as dangerous sometimes even more dangerous as some cancers. And because it does not have the same sociological impact as cancer it does not get enough attention,” said Dr. Lion.

Although Kameron’s life isn’t promised, this family says the sky is the limit when it comes to this superhero.

“Kameron deserves happiness, he deserves love and we will do whatever it takes. Just like he said with every parent that’s what we do. We wake up and it’s about our kids. At the end of the day I can lay my head down and know that I’ve done everything I can and that’s what keeps me going because I will continue to do everything,” said Jordan.

If you would like to follow Kameron’s journey, click here.

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