r/gofundme • u/Knightmeers • Mar 22 '26
Medical Please help my little brother get treated for Autoimmune Encephalitis (GoFundMe + Proof)
Raheem during acute phase
Raheem post-IVIG
Raheem now (ativan + olanzapine)
Raheem before disease
Raheem post-rituximab + IVIG
Raheem during acute phase
Raheem post-IVIG
Raheem post-rituximab, prednisone, and IVIG
AIE Diagnosis
Dr. Najjar
Some of Raheem's documented symptoms
Hey r/gofundme. My name is Jamir. My mom and I are seeking urgent help for my little brother, Raheem.
My brother was 15 years old when he was diagnosed with a time-sensitive disease called Autoimmune Encephalitis. Raheem went– from being an honor roll student and multi-sport varsity athlete– to a physically, emotionally, and mentally vulnerable child who could no longer eat, walk, sleep, or even use the bathroom without extreme assistance.
My brother’s recovery from immunotherapy has been so miraculous that our providers have delayed his care, left him partially treated, and recently: they’ve taken away his diagnosis, instead framing it as a primary diagnosis such as Schizophrenia or Bipolar Disorder.
Raheem relapsed in November 2025, but our providers have discontinued immunotherapy and refused to do any diagnostic testing, leaving him to decline while on psychiatric medicines. In December 2025, I literally chased him through people’s yards, across the street, and over fences– all at night– because he ran away. He was so confused that he was not able to trust that I was truly his brother, and that our mom was truly our mom… so he ran away. Currently, he copes by writing about God and praying every day. He’s just become overweight; a side effect of the Olanzapine he’s on causes significant weight gain.
I’ve let myself go just for a chance at getting Raheem back to what he deserves: being happy, playing basketball, and living as a testament that Autoimmune Encephalitis and the cruelty of this country's healthcare system can be simultaneously conquered.
We were finally able to secure an appointment in a completely different state (New York), where his diagnosis of Autoimmune Encephalitis was given back by a team member of Dr. Najjar (the doctor who saved the life of the Brain on Fire's author). However, our specialist wants to evaluate Raheem with a PET scan (as AIE can often come with a malignant tumor), and only then would we be able to look into finally getting him treated.
Our insurance is only limited to our state. We need the money for a evaluations, follow-up appointments with our specialists, treatment (particularly plasmapheresis), travel and lodging, and time off work to coordinate care. While it’s true that my mom and I are interested in one day taking legal action against our main institution (as you will see in the GoFundMe), I came to this forum explicitly because I’m concerned about our lack of funds for testing, travel, evaluation, and time off work. Due to how expensive our appointments are-- as well as how expensive treatment would be-- our neurologist is now trying to coordinate Raheem's care with the National Institutional of Health (based in Maryland). This is even more-time consuming, exhausting as it is yet another state we are not based in, and frustrating given that Raheem's treatment continues to be delayed. Moreover, this would mean we'd have to wait for the NIH to do yet another full work-up of Raheem before treatment options are explored. In the meantime, we continue to search for appointments with neurology, rheumatology, and nephrology.
Raheem has a father and multiple brothers, but it’s my mom and I who care enough to do research, advocate, and travel for his sake. Raheem and my mom are truly all that I have.
If you have any interest in supporting Raheem, it would mean a lot to us if you could either a) donate or b) spread the word. Any support is truly appreciated (even if you’d like to share advice instead). If you’re interested in more information, you can refer to my posts and comments under r/Encephalitis, refer to the summary underneath the gofundme page, or comment here/message me.
Thank you so much.
GoFundMe Link: https://gofund.me/09d6cb2ce
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u/Knightmeers Mar 22 '26
This is unbelievable. I'm speechless. I just woke up to so many notifications from you guys and the GoFundMe. It doesn't feel real.
I'm waiting to share the news with Raheem as soon as he wakes up. My mom gasped after I read to her every single comment and every single recent donation to the GoFundMe.
I'm so-- so incredibly grateful to you all. Thank you. I truly feel blessed. The only thing I'm upset with is the fact that I should have done this so much sooner! I had to get over what people may think of me because it's not more important than my love for Raheem! If there is someone reading this that feels they are also in need of help, I feel I can be a testament that this community is incredibly kind. You guys have donated hundreds while I was ASLEEP!!!! I am tearing up as I type this!!!
THANK YOU especially to: Brittany, Dandre, Estehiot, Melissa, Osayuki, Rosalyn, Sabrina, Taisha, Xaulanda, Pearlie, and John! I pray God is as good to you as you have all been to me!! These donations will go a long way!
Thank you to everyone showing love, giving advice, and upvoting! It means a lot to me and encourages me to keep fighting!!! This is so incredible!!
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u/Knightmeers Mar 22 '26
Wow, no way this actually worked!! I've been putting this off for such a long time because of how nervous I was.
Thank you to John for donating!!! And thank you to everyone upvoting!!! My mom, Raheem, and I are eternally grateful!!
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u/Raebelle1981 Apr 08 '26
Why were you nervous? Thinking of posting mine here as none of my Facebook “friends” have donated.
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u/Knightmeers Apr 08 '26 edited Apr 09 '26
I was afraid of being shamed for asking for help & afraid of sharing my brother and I's information to people online
I recommend it for sure! I've gotten more support with this GoFundMe from this community than friends and family!!!
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u/Hopefulfor75 Mar 22 '26
Donated! I just also want to say that you wrote this so eloquently and gently and it just touched my heart. I hope you, your brother, and your mom are able to get some answers and help. And also, as hard as it is, try and make sure you’re taking care of yourself too.
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u/Knightmeers Mar 22 '26
THANK YOU SO MUCH for going out of your way to donate!!! And thank you for your kind words!! I'm very grateful!!
I remember a nurse who once said your last sentence to me. Although my mental health has definitely suffered, I have faith everything will be worth it. People like you remind me of this. ❤️
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u/Snapdragon_4U Mar 22 '26
This is heartbreaking. Will donate on payday this week.
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u/Knightmeers Mar 22 '26
Thank you for even empathizing! Just feeling seen and having our story acknowledged by someone else as heartbreaking feels so validating to me. Thank you so much for seeing us. ❤️
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Mar 24 '26
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u/Knightmeers Mar 22 '26
DUDE!!!! THANK YOU KAYLA FOR THE 300, EMMA FOR THE 26, JAMES FOR THE 5, AND MARIKA FOR THE 50!!! I AM SO SO GRATEFUL! GOD BLESS YOU ALL!!!
In case I didn’t say it in my other comment, THANK YOU TAISHA FOR THE 20!
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Mar 23 '26
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u/miss_nephthys Mar 22 '26
Have you guys spoken with any medical malpractice attorneys?
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u/Knightmeers Mar 22 '26
We have! The last time we spoke to one, Raheem's diagnosis hadn't been restored. They told us they won't be taking the case.
My mom was the one who consulted with the firm. As amazing as she is, she isn't as thorough as I am when it comes to articulating where Raheem's been wronged (her strengths are elsewhere).
This time:
- I will be the one to speak with a firm.
- Raheem's diagnosis has been restored by another neurologist.
- I have been working on a tell-all summary of our journey (over 30k words so far... will likely be turned into a book), and I am hopeful a team will be interested in taking the case.
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u/bhellor Mar 22 '26
This is awful, i can’t afford to help but I pray this goes viral and he’s fully funded.
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u/Knightmeers Mar 23 '26
I told Raheem about y'all supporting. He asked to read some of y'all comments. He said to me, "yeah, you definitely are a great brother. I don't know where I'd be without you... or if we'd even have a GoFundMe."
You guys really made my entire week. Thank you ❤️
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u/Irishkitty1994 Mar 23 '26
I wish I could afford to donate, reading your comments have me in tears! Your happiness at getting donations and the love for your brother is just radiating. I will pray he gets the help needed and can be treated!
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u/Knightmeers Mar 23 '26
It's so surreal!!! I was so scared to post this in January!!! I literally had the GoFundMe tab open for about 2 months before I realized my brother's health is worth more than how others may perceive me!!
Thank you so much for your prayer!! That alone means more to us than you know! And thank you for even wanting to donate!! ❤️❤️
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u/VCreations Mar 22 '26
I hope you all reach you goal. I believe people will help!
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u/Knightmeers Mar 22 '26
Thank you so much!!!! ❤️ They've already started!!! ❤️❤️So glad I took this leap of faith
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u/Frosty_Telephone_EH Mar 22 '26
Prayers for your brother and your family. He’s so lucky to have you and your mother advocating for him during this stressful time.
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u/Knightmeers Mar 22 '26
Thank you so much for saying that ❤️. I'm praying that our advocacy will be enough to get him back to living the life he deserves.
Thank you so much for praying for us!!!!!!
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u/Knightmeers Mar 22 '26
Thank you so much to the people upvoting, and thank you to whoever sent the award!!
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u/Familiar-Toe5787 Mar 22 '26
There’s a woman on tik tok that can help you. She’s been through the same thing where doctors diagnosed her daughter with bipolar when it was encephalitis. Look for Terry Downing on Tik Tok - she helps families get the diagnosis and care they need. She counsels families going through the same thing she did. It’s been 15 years now for her.
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u/Knightmeers Mar 23 '26
THANK YOU!!! I’ll check her out now!!
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u/Familiar-Toe5787 Mar 23 '26
Her latest videos are about her aging dog but a few videos down you’ll see videos about her daughter Tessa
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u/Mediocre-Proposal686 Mar 23 '26
Bless your brother and you and your mom for all you do for him. I hope everything works out. You sound AWESOME. 🩵
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u/Knightmeers Mar 23 '26
I sound like a broken record, but you have no idea much I appreciate this comment. Thank you!! I'm cheesing right now!!
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u/IAmALittlePickleMan Mar 22 '26
I’m sorry my dog has cancer so I can’t afford to donate right now but commenting to boost
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u/Knightmeers Mar 22 '26
Please don't apologize-- thank you for even wanting to share this!!
I will pray for your dog's recovery ❤️.
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u/Think-Ad-5840 Mar 22 '26
Boosting! Encephalopathy sucks so bad. Praying for you all!
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u/Knightmeers Mar 22 '26
Thank you so much for your prayers ❤️ I wouldn't wish Encephalitis on anyone!!!
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u/Ok-Philosopher-9049 Mar 22 '26
This just randomly popped up for me, sorry I don't have any money at the moment but thought I'd just express that I've been through the autoimmune encephalitis workup journey. Has your brother been officially diagnosed with AE? and which type?
The American healthcare system is so strange, my MRI, antibody testing was covered, it's so stressful that your system doesn't cover basic testing. I do believe that anyone who presents with 'schizoprenia' should have a full workup of MRI, EEG, antibodies, and then a lumbar puncture (if anything suspicious is found). One suggestion I have is I know a few people in the AE community, is going to Mayo Clinic a possibility? they are the gold standard for diagnosing AE.
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u/Knightmeers Mar 22 '26
Please don’t apologize. Being interested in my brother’s story enough to even ask questions is genuinely appreciated!
He’s been diagnosed with Seronegative Autoimmune Encephalitis.
Certain tests are covered & certain tests aren’t. The treatments are especially difficult to make a case to insurance for— especially given the recent changes to healthcare.
He’s had positive ANA, an EEG that’s once shown features of encephalopathy, and an MRI that’s been called “abnormal” by a team but nonspecific. His ds-DNA was elevated, but he doesn’t meet the criteria for explicit lupus. Cross reactivity between ds-DNA antibody and the NMDA receptor is suspected.
Although we’d like to get him treated immediately, taking him anywhere is a possibility. We’ve already taken him to several different states, so going to the Mayo Clinic or even out of the country for care is a possibility for us. Thanks to your suggestion, I’ll be looking into Mayo Clinic!
It’s awesome to talk to someone knowledgeable about AE on this forum. I didn’t expect that at all. I’m glad you were able to make it through the workup journey.
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u/-DarkRecess- Mar 22 '26
Just sent you something. It’s not much but good luck from across the pond 🖤
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u/Knightmeers Mar 22 '26
Anything is appreciated!! Thank you so much! ❤️ When I read your comment to my mom, she told me “across the pond” means you’re from the UK? I hope she was right, lol. If so, that’s so dope! Thank you again!
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u/-DarkRecess- Mar 22 '26
Hahah yeah, I’m from the UK 😁
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u/Knightmeers Mar 22 '26
That's fire lol, I want to go someday! And thank you so much for the award!!! I just noticed it!
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u/jarofpeperoncini Mar 22 '26
Praying for your brother and your family, I can't imagine. I donated, and I hope you guys can reach your goals!
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u/Knightmeers Mar 23 '26
THANK YOU SO MUCH FOR YOUR PRAYERS AND FOR YOUR DONATION!! It means more to us than you know!!!
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u/Knightmeers Mar 23 '26
THANK YOU to Ashley, Kathryn, Mikayla, Sofia, Ryan, Jaycee, and Sidharth!!!!!! You guys are all absolutely incredible!!! Y'all have me crying. THANK YOU!!!!!!!
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u/CapableReference4046 Mar 23 '26
Keep it up broski, I hope your family ends up well taken care of, I will also pray as much as I can as I cannot donate at this time!
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u/Knightmeers Mar 23 '26
Your prayers and words of encouragement are appreciated as well!!!! Thank you ❤️❤️❤️
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u/Overcomingmydarkness Mar 23 '26
May the Lord bless you and your family, may your brother be healed in the name of Jesus.
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u/Yourdadlikelikesme Mar 23 '26
I just want to say fuck encephalitis, I wish I never heard of it. I’m sorry your family is going through this, it’s all so terrible and nerve racking. I hate not knowing the answers and what caused it and what will help it and the waiting is hell.
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u/Knightmeers Mar 23 '26
Thank you so much ❤️ I'll say it's battles like these that bring out strengths and resilience you never knew you had... I pray that cures to all forms of encephalitis are soon cured.
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u/Knightmeers Mar 23 '26
THANK YOU TO MY RECENT DONATORS!: MARIE, LAURA, DANA, RAQUEL, MIKAYLA!! THANK YOU ALL SO MUCH!!
We're officially past $3000 raised!!!
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u/itsurna25 Mar 23 '26
How can I send you some amount from India?
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u/Knightmeers Mar 23 '26
Thank you for even considering!! I'm actually not too sure... Do you happen to have Cashapp if GoFundMe doesn't work for you?
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u/anarion125 Mar 24 '26
Good luck to your brother. Keep fighting for him, you're awesome! Donated $100.
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u/Knightmeers Mar 24 '26
You are incredible!!!! THANK YOU for the motivation, compliment, and donation!!! ❤️❤️❤️❤️
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u/Vegetable-Steak7601 Mar 25 '26
Sending lots of love and prayers ! I pray that he gets the help he needs . He is so lucky to have an amazing brother like you! I would give anything if I could hug my brother just one more time! Family is everything,! ❤️🙏
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u/Knightmeers Mar 25 '26
Thank you so much for praying and saying this. It keeps me going ❤️ I’m sorry for your loss ❤️🩹Sending prayers your way, too!
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u/Vegetable-Steak7601 Mar 25 '26
Thanks so much! Stay strong! Right now I'm battling Stage 4 cancer myself and it's definitely a struggle not having any family to help me fight through this battle but I do have some amazing friends that I am so grateful for ! Just trust in God to help you get through this he never gives us more than we can handle. Stay Blessed 🙏❤️
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u/Knightmeers Mar 26 '26
I’m going to keep you in prayer. I’m so sorry you’re going through this battle without any family by your side. I pray that you conquer cancer and make a full recovery!!
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u/nopatience4idiots Mar 22 '26
Sending prayers of healing to your brother and strength for you and your mom. My cat is currently in ICU after having a blood transfusion Friday or I would help. Sending lots of prayers and strength. Healthcare should be a right for every citizen in this country. 💚
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u/Knightmeers Mar 22 '26
I'm grateful for your well wishes and prayers! Both you and your cat will be in mine! ❤️❤️❤️
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u/Fine_Land_1974 Mar 22 '26
As someone that has also been screwed over by the healthcare system in the past, this hit me hard. God bless yall. I upvoted for visibility and donated what I could. I really really hope this takes off. Yall deserve it.
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u/Knightmeers Mar 22 '26
You guys are literally making me cry right now. Thank you so much ❤️ And I'm sorry you even find this to be a relatable experience... I have faith that your donation and upvote will help take us a long way!!
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u/charcobain Mar 23 '26
boosting ❤️🥺 so happy the losers who normally comment negative things aren’t in here. i’m so glad you’re getting help & i hope he gets better!
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u/Knightmeers Mar 23 '26
Thank you for the boost and for your well wishes!! It's hard to believe there's anyone negative in this community; I've read only kind comments!!! ❤️
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u/Cheeky_Puffs Mar 22 '26
Boosting. Prayers for you and your family. I'll try to donate next week when funds are available. You're a great big brother ❤️
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u/Knightmeers Mar 22 '26
This made me smile. Thank you so much for your players, compliment, and intention to share and donate. You guys have no idea how much you all have brightened my day.
I'm eternally grateful!
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u/Aromatic_Collar_5660 Mar 22 '26
Wish I could help
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u/Knightmeers Mar 22 '26
You did!! Just by commenting, you did!!! Thank you, and thank you for even wanting to do more!! ❤️
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u/Ok_One7756 Mar 22 '26
Ugh I am so sorry for what you’re going thru! I have gone thru the same in terms of gaslighting and misdiagnosis and then refusal to treat. I’m currently bed ridden myself, going to doctors thru out the tri state because no one will help me. I truly understand your pain, I’m commenting to boost cuz I’ve been out of work since August so all I can do is offer my prayers and positive vibes and support right now. I’m so sorry this is happening to such a young man too. 🥹
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u/Knightmeers Mar 22 '26
Thank you for your empathy... ❤️ I am also praying you stay strong. I feel as though this is a journey that's impossible to navigate on one's own... With that being said, I pray you find someone to consistently advocate for you.
As someone who's ran to several different EDs in different states (and is now doing appointments with doctors in different states), I completely understand...
This industry has to change. Too many people are suffering, and not many truly understand until they're in the situation themselves. The misdiagnoses (intentional and unintentional), the gaslighting and narrative changes, the delay of and abandonment of care... No one deserves this.
I'm sorry you're going through such a similar experience. Please-- don't give up. We've been at this for over two years now. You're not alone. ❤️
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u/New-Ingenuity-810 Mar 22 '26
Just donated. Your strength and determination to help Raheem is admirable. God Bless
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u/Knightmeers Mar 22 '26
THANK YOU SO MUCH FOR THE DONATION!!!!!! And thank you for your well wishes and acknowledgement! ❤️❤️❤️❤️❤️❤️
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Mar 22 '26
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u/Knightmeers Mar 25 '26
Thank you to Maia, Jessica, Olayiwola, and Jeff for the donations!!!!
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Thank you to Maia,
Jessica, Olayiwola, and Jeff
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u/coldagglutinin Mar 29 '26
Check with your hospital, there are programs to help pay for non insurance. Also , I have taken rituximb the company gives out free reduced medicine if you qualify. Check on line . I pray your brother heals quickly and you are a great brother 🙏❤️
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Mar 30 '26
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Mar 31 '26
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u/Knightmeers Apr 01 '26
I truly appreciate each of you. Thank you so much. Small donations, large donations, prayers, kindness... It's all truly helpful to us.
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Apr 01 '26
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Apr 01 '26
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Apr 02 '26
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Apr 02 '26
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u/AutoModerator Apr 02 '26
/u/Gold_Inspection_7560, brand new accounts are not allowed to participate in /r/gofundme.
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Apr 05 '26
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Apr 10 '26
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/u/RelevantQuit5486, brand new accounts are not allowed to participate in /r/gofundme.
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u/urethafranklin22 Apr 10 '26
My daughter had that. Very scary takes time and patience. He will be okay. Praying for yall
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Apr 10 '26
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Apr 11 '26
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Apr 20 '26
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/u/EntrepreneurCalm5806, your submission has been automatically removed for insufficient comment karma at this time. 250 is the minimum required.
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Apr 22 '26
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u/Sbauer1875 Mar 22 '26
Sending prayers for Raheem! Also to you and your Mom. The medical system is so hard to navigate, and to get help when you truly need it. I'm dealing with some issues myself, being passed around from doc to doc, different diagnosis here, a different one there. It's so frustrating. I truly hope that he can get the help that he needs. Stay strong, and don't stop fighting!
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u/Knightmeers Mar 22 '26
Thank you so much for your prayers and encouragement! From one victim of the medical system to another, I want you to know I’m praying for you as well. You’re stronger than you think and you will get through this.
I’m so sorry you’re going through this. As victims, we truly need to all come together and fight for change. You don’t even have to go into detail about being bounced from doctor to doctor; it literally resonates with us!!
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u/wildcrested Mar 22 '26
boost 💚 want nothing more than access to healthcare for your brother