00:0018 year old Kenton family didn't know Layla Anderson but one decision that he made had a
00:05bigger impact on her and her family's life than anyone could have ever imagined. This is the
00:10story about how Kenton saved Layla's life. On the day that Layla and her family's life was turned
00:16upside down Layla was being driven to school. It was a normal day and she was looking forward to
00:22seeing her friends but when she arrived she wasn't her normal bubbly excited self. She was confused
00:29unable to focus, unable to speak clearly and she couldn't even stand up. Something was seriously
00:34wrong and her parents rushed her to hospital. She was reassured by the doctors there that it was
00:41just dehydration and she'd be absolutely fine if she kept her fluids up. However as the episodes
00:47continued and the doctors ran some more tests it became clear that something more sinister was at
00:52play. The doctors didn't know what was wrong but it wasn't looking good. Whatever it was was affecting
00:58her brain and nobody could work out why. They took tissue from her brain to study and just about
01:03every specialist from every wing of the hospital went through the revolving door of Layla's ward
01:08all testing their theories and with each failed attempt at explaining Layla's condition any hope for
01:14Layla to get better was being worn away. Layla was given multiple diagnoses that didn't quite fit
01:20until the doctors reached for outside help. Julia. Julia was part of the consultation service and would help
01:27other doctors with a fresh perspective anytime they were struggling to understand a case.
01:32Julia spent days combing through hundreds of pages of academic research papers searching for clues.
01:37Each paper becoming a piece of the puzzle to understanding the strange results that were showing up in Layla's tests.
01:44Julia landed on a diagnosis 16 months after Layla had first shown up in the emergency room.
01:50primary isolated central nervous system hemophagocytic lymphocytocytosis.
01:55It's a really really hard diagnosis system. It's a very unusual, it's very rare,
02:02it's not going to show up on most thought processes of what could be going on.
02:06When Layla was diagnosed there had only been 15 reported cases in the entire world.
02:12Layla was 10 years old when she got the diagnosis.
02:15You get an answer is not the answer you wanted to hear, but it was an answer.
02:23She was told she needs chemotherapy, she wouldn't look anything like she looked before, and she would
02:28need a bone marrow transplant. But nobody in Layla's family was an appropriate match, so they
02:35turned to the organization Be The Match to find her lifeline.
02:38I got a call and they told us that we had three possible matches.
02:44A few weeks later and I got the call saying that one person is a perfect match.
02:52And they not only agreed to save Layla's life, but they said they were excited in capital letters.
02:59I'm Kenton Felmley, I'm from Lawrence, I'm 19 and I'm currently studying at KU.
03:04Kenton joined the bone marrow registry a few months after turning 18,
03:08when he was inspired by his high school history teacher talking about her experience being
03:13a donor.
03:13And just a few months after joining the registry, he was told that he could be a potential match.
03:18I got a call that I was a preliminary match about three months after I had joined the registry
03:24and I started talking to her.
03:25She told me that I was the best match for a 10 year old girl.
03:29I had to pull over because I couldn't stop crying.
03:35It was one of the best days of my life.
03:37And when he learned more about Layla and her condition, he couldn't help but draw the connection
03:41to someone close to him.
03:42When I was a kid, my dad was sick a lot of the time.
03:47There were times where I'd come to my mom and say, why is dad so sick?
03:52As I've grown up over the years, I've realized that he wants nothing more than to have a normal
03:58life and to spend time with his kids.
04:02But because of his condition, he can't.
04:04He has CVID, which is Common Variable Immunodeficiency Disorder.
04:10Growing up, seeing his dad suffer and unable to spend time with him and his brothers, Kenton
04:15wanted to do anything in his power to help those in need.
04:18This desire pulled him towards the medical field, where he had just begun studying at
04:22the University of Kansas to become a doctor.
04:25And this desire to help others connected him to a little family a whole state away that
04:29was incredibly grateful for his compassion.
04:32What can I possibly say to somebody that saved your daughter's life?
04:36That's all I could do was just say thank you, over and over.
04:40The donation was successful, but Layla's family weren't able to breathe freely just yet.
04:45Her testing has been 90% perfect.
04:48And there was one test in there that was like questionable.
04:54I asked Dr. Vanarski, when do I get to take a breath?
04:56And he said, at one year, you can take a baby breath.
05:00And at year two, you can take a good one.
05:03One year passed and they began making plans to meet up in person at an event held by Be The
05:08Match.
05:08Even before we knew we were going to meet.
05:11I wrote letters to Layla and ones I didn't know if I was going to send or not.
05:16She would pop it into my head, you know, and I'd wonder, how is she doing?
05:20You know, is she doing okay?
05:21Please welcome Kenton to the stage.
05:26Layla, meet your donor.
05:43Now, four years later, Layla and Kenton call each other brother and sister.
05:47They're best friends.
05:48And Layla's looking and feeling a whole lot more like her old self.
05:52She's got all brand new immune system from the donor, right?
05:56So her immune system, which was defective before, has been completely replaced by a brand new immune system that will
06:03function completely normally and won't trigger this HLH.
06:07I just want to say thank you for the second chance at life.
06:11I don't know where I'd be today without you.
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