<div>Hello, I would like to start off with I do not like asking for help, but it has come to the point I need to. My fiancée, <strong>Jeff, has a rare sleeping disorder called Kleine-Levin Syndrome, also known as Sleeping Beauty Syndrome</strong>. This is a rare neurological disorder characterized by recurring episodes of excessive sleepiness (hypersomnia) alongside cognitive and behavioral changes. These episodes can last for days or even weeks, with periods of normal sleep and behavior in between. He has been battling an episode of this since 07/05/2025. We are going days in a row where sometimes he can be asleep for 22 hours, if not more. I try and get him up to be able to move around and eat and drink. With this, he has also disassociated to where he has no recollection of anything that has happened or that any time has passed.
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<div>On 07/13/2025, he woke up throwing up, screaming in pain, saying, "I have a kidney stone, take me to the ER." So we went. When we got there, the doctor gave him Zoloft because he was going to give him morphine for the pain. Within seconds of it going through his IV, he was screaming bloody murder that it was making the pain worse. Within 5 minutes, they came back and gave him a high dose of Dilaudid. He was looking at me, and then his head dropped, and he stopped breathing. I was shaking him to wake up. The nurse said morphine can cause the oxygen to drop, so they put him on oxygen. When he came to, he looked at me. I said, "Are you okay?" He said, "Yeah," looking scared. I asked if he knew me, if he knew who he was, where he was, or if he had kids. He said no to all of them. The doctors said he's just on a narcotic high because of the medicine, but it wouldn't cause that to happen. We were told around midnight we were being transferred to another hospital because the CT came back and there were multiple lesions on his kidney that could be bleeding internally. When he finally woke up for about an hour the next day, he was finally coming to and knowing things. The doctors at the new hospital could not explain this either. They said everything they can do is outpatient, so they were sending us home.
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<div>While this is going on and waiting for the appointment with a urologist, he has missed work. <strong>He is the breadwinner of the family with the rent and all the higher bills. With him being out, it's been hard.</strong> We went to the urologist finally, and he was in and out in 5 minutes. "I don't know why they transferred you to a different hospital and why they are concerned about the kidney when there are multiple lesions on the liver that are bigger and are the ones that could be bleeding internally. The pain he is having is not from the kidneys." This was news to us because not one person had mentioned this to us. He gave us a copy of the CT readout and showed it to us. They said they wanted an MRI in a couple of weeks. We leave and call the PCP to see what to do because he was told from the hospital to only take Tylenol for pain. The PCP said the Tylenol could be damaging the liver more and we need imaging now because we do not know what is causing this to happen. His job told him to do FMLA to secure his job, but he will not be paid for this time out. At this moment, the PCP is pulling him out for 6 weeks minimum, if not more, from last Monday, 07/21/25. We still don't have answers, and he is still sleeping most of the days and nights, still not being the Jeff we know and love. He doesn't play his games anymore, he won't respond to friends and family checking on him, and is still not showing any emotions—no smiles, laughs, or anything. His body just wants to sleep.
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<div>This is hard and stressful on me because I know my checks will not cover the utility bills, rent, car payment, gas, and food for the 5 of us, and we still have to make sure his child support is paid. My job does not offer overtime, and the car is not in the best shape to be able to do DoorDash like I was able to before. We are scared we will not make ends meet and lose the house or have utilities cut off. We have had some family help, and it has helped keep food on the table and a couple of the bills paid, and the kids' school supplies since they have returned to school. <strong>If you are able to donate to help keep us afloat during this time, we would greatly appreciate it. If you're not able to donate, just passing along uplifting thoughts, messages, or calls would be greatly appreciated, or if you are able to share this as well, it would be greatly appreciated.</strong> If you have any questions, I will be more than willing to answer them. Thank you. I will update as soon as we have answers. We all just want our Jeff back. 
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Jeff Needs Us: Facing Rare Disorder & Hardships

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Jeff Needs Us: Facing Rare Disorder & Hardships

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