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Jenai Johnson

<div>05/2025
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<div>First, thank you for any and all support! These trials and tribulations do not define who I am. This has been a very uncomfortable vulnerable experience for me reaching out to communities and neighbors for support and encouragement.
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<div>I’m writing to ask you to support our need to get a little ahead, to feel a little bit of hope in such a dark tunnel. Just a small donation of $10 can help me feel a little ahead in this time of need.
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<div>I’d like to discuss my son’s history. It will be just the basic and you might think after reading this “how is that basic” because there is so many little things in between.
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<div>Jacob my sweet boy is 11 years old. He was born with BORS. Branchio Otto Renal Syndrome. At birth he was very sick and at 2 months he went in for his first kidney surgery. From having a grade 4 kidney instead of fixing his ureter, his Urologist at UC Davis put a stint in which required him to be on an antibiotic for a whole year. He got so sick in that year too. No one told me about pro and prebiotics. He got C-Diff two different times requiring a week in the hospital each time. During that time he had multiple tympanostomy tube insertion.
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<div>At 3 he was good as gold. The doc said you don’t need to come back anymore it’s healing and growing naturally. I have been feeding him anything a normal kid would eat from 3-9 years old.
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<div>At 9 he started having less and less urine come out so we re-established care with a nephrologist. That doctor wanted to order an ultrasound, and that was when we found out that his left kidney had died a long time ago. It was a completely failed surgery and we should never have been told we didn’t need to be seen anymore. We had a second opinion that told us it was gone but I didn’t believe it so we went back to UC Davis where the PA lied to our faces and said he’s fine. So, jumping ahead at 9 that put the right kidney on overdrive giving him kidney failure(but we can work with it with diet and exercise)the diet part is the worse but we have to and he is understanding that now.
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<div>3/12- New nephrology appointment at Stanford. Jacobs labs showed a decline in his one kidney, the right. He is stage 3 now. He also has very few white blood cells and he’s not producing new mature ones. More testing for his bones now. He is also getting vestibular testing due to his chronic dizziness and passing out.
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<div>Now for the ENT care at Stanford
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<div>So, from 3-current we have focused on his ears(dad’s side of family). he had failed tubes, infections then fluid started leaking out of the pits of his ears(they almost look like piercings at the top of ear). MRI and CT led us to a 2 surgeon 7 hour ear surgery. He’s now a case book study at Stanford Children’s ENT. He was born with no bone structure in his right ear so he is deaf. With that he has had cysts that keep coming back that sit on his main facial nerves. He’s had bone carved out just to get to them. Jacob, my son, will be doing our 2nd sleep study because he’s a little older now, 11 and we have to see if his mild Apnea got worse. He was tested at 7. Normal folks with Apnea have their brain tell their body to breath after holding for x amount of seconds during sleep. My son doesn’t have that so he can’t sleep on his back. He holds his breath for up to 20 seconds and doesn’t wake up like you would normally with a snore.
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<div>We are finally heading back on Monday 3/10 for three appointments. All in one. I’m in need of continued prayers and positive thoughts encouragement.
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<div>the funds will be used for my monthly bills, food and household expenses. I’m constantly going without food and water after two weeks or some from grocery shopping (funds from county) due to the expensive new diet he is on. 
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<div>thank you so much,
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<div><br />
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<div>❤️ Jenai and Jacob ❤️
</div>
<div><br />
</div>
<div>P.S. we love prayers and we love cards too. If anyone would like to send us any please feel free to grab my address. Please continue to pray and follow for updates.
</div>

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Jenai Johnson

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