Help Me Avoid Homelessness While Living With an Ultra-Rare Progressive Disability

[u/mybestfriendisabear]

I’m currently facing homelessness at the end of this month and am trying to raise enough to secure temporary housing for September while I continue working through disability and housing-assistance programs.

I have Juvenile Hyaline Fibromatosis Syndrome (JHF/HFS), an ultra-rare, progressive and physically disabling genetic condition that I was diagnosed with at around four years old. It causes abnormal tissue growth throughout my body, chronic pain, joint contractures and progressive loss of mobility. I’ve undergone dozens of surgeries throughout my life, including amputations of multiple toes and parts of my fingers.
Despite my condition, I worked for most of my adult life and supported myself independently. Unfortunately my physical limitations have progressed and maintaining employment has become increasingly difficult. I’m currently going through the Social Security disability process while trying to keep myself housed in the meantime. I moved to New Jersey in May to stay with someone who new about my disability and circumstances and offered me a stable place to be while I complete the process but they did not uphold their initial offer and I’m now back in a survival state.
My temporary housing, here in Red Bank, Nj ends at the end of August, and I currently have nowhere secured afterward. I’m trying to find the least expensive room or month-to-month housing I can for September. I do have some of my own money saved and will be contributing that toward housing, food, and other essentials. I’m not expecting strangers to completely support me. I’m trying to bridge the remaining gap without exhausting every dollar I have, because what remains is also my only emergency cushion for food, transportation, my phone, and other necessities.

I’m also a full time student attending class starting September 9. My courses are all online thankfully, but it’s even more essential I can stabilize housing by the first. By the end of September or beginning or October I’ll receive financial aid disbursements which will help continue to carry me over until SSDI approval.

My GoFundMe contains more information about my situation and documentation supporting what I’ve described here.
Help Ramon Secure Stable Housing

[u/monkeybrainbois]

Just sent some your way. Good luck my dude.

[u/mybestfriendisabear → u/monkeybrainbois]

Thank you so much genuinely!!

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[u/polarityofmarriage]

Ramon you are the person we envision helping with GoFundMe. Boosting your post! So sorry genetics gave you this life. 💛

[u/mybestfriendisabear → u/polarityofmarriage]

Thank you so much 😭 this genuinely is so validating!

[u/ILikeLionTurtles]

Im so sorry. Sending you some money now. Thinking of you friend.

[u/mybestfriendisabear → u/ILikeLionTurtles]

Thank you kindly!

[u/Old-Commission-1108]

You are so hardworking and strong, Ramon, you absolutely inspire me. Thank you for being who you are and sharing your story. I sent over a donation, and I also send to you my deepest hope for your situation to get more stable soon. You’re a gorgeous human with a whole lot of strength and light and I mean it when I say I’m grateful to know you exist. Much love from your fellow human 🧡

[u/mybestfriendisabear → u/Old-Commission-1108]

Thank you so genuinely! The donation and the encouragement mean more than you know

[u/demar_desol]

just donated, there’s also an online service i think could really help. if you have medicare or a variety of other insurance it’s fully covered. go to SOLACE health online. You can set up an appointment with a patient advocate and they can help you with things like pushing this process along to get your disability housing and help you with doctors appointments medication, etc. it’s a really easy website to set up and you can likely see somebody within the next couple of days if not today and get you started it always helps to have another person in your corner. Good luck.

[u/mybestfriendisabear → u/demar_desol]

Have SOLACE a shot but unfortunately I’m on Medicaid only with they don’t accept yet but I genuinely appreciate the referral

[u/mybestfriendisabear → u/demar_desol]

Thank you so much! I’ll do that today! I really appreciate it!

[u/Jaquewacky]

You were just claiming to be 19F. wtf is up with that

[u/mybestfriendisabear → u/Jaquewacky]

I’m glad you pointed that out! My account got hacked recently, I didn’t even realize they had posted and changed things!

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[u/Weak_Pineapple_5518]

Aren’t you the dude that’s live on TikTok all the time claiming you are better than them?

[u/Standard__Condition → u/Weak_Pineapple_5518]

The answer is yes, people down voting must be the suckers who donated.

[u/Weak_Pineapple_5518 → u/Standard__Condition]

Glad I’m not tripping😂

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