Rare Synucleinopathy Treatment

Campaign Created by: Kate

The funds from this campaign will be received by Razi Berry.

Raised: USD $ 40,623
After being misdiagnosed for over two years, and undergoing intensive diagnosis and treatments out of pocket for a mysterious debilitating neurological condition Razi’s condition worsened. What started with muscle twitching dizziness and vision disturbances grew to convulsions,fasciculations, heart rate changes and weakness. Then swallowing and digestion issues. Various clinics and hospital stays did not yield definitive answers. One treatment resulted in blood clot from her neck down her right arm. Treatments weren’t working…then she underwent a biopsy for a rare condition. 

 Bedridden for nearly three years since symptoms appeared her muscles, nerves, vision, mobility, swallowing and limb weakness are affected, she was finally diagnosed with a rare synucleinopathy- via biopsy.

Prior to this she was an active mother homeschooler entrepreneur, publisher, speaker and activist. To know Razi is to know her soft spoken manner, her steadfast stance for freedom and liberty, and her love of making people laugh and feel seen.  First and foremost motherhood was her proudest calling. 

 Razi had to close her business of 18 years due to decline in nervous system function, leaving her unable to perform daily tasks. Although confined to the bed due to weakness, autonomic and mobility issues, we are grateful that her voice is strong as is her will to fight! This uncertainty has been devastating for her and her girls. 
A single mother of two daughters, they have a lot to fight for. With this rare diagnosis the doctor recommends stem cell and neuro immune treatments. There are no guarantees of healing with the treatment but if you feel led to give, you will join in our hope that miracles can happen. 
Funds will go toward a nurse advocate, transport and treatment to inpatient center for an initial two week inpatient stay for treatment when goals are met, and to ease the financial burden the illness has brought to her and her daughters. 


UPDATES

Update #8
February 28, 2024
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Razi is 1/3 of the way to the goal to get treatment. Synucleinopathies affect the central and autonomic nervous system and every organ and body system is affected- vision digestion movement etc. Please share this fund in a hopeful push to get her and her girls the opportunity for relief through this treatment. 

The prior update has a beautiful article written about her that you can share as well  

We are God’s hands  


Update #7
February 26, 2024
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MUST READ Beautiful article about Razi

Important Update #6
February 18, 2024
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Synucleinopathies are rare, cruel, hard to diagnose slow killers. They attack your central and autonomic nervous systems affecting every single body system in cruel and painful fashion. They are theives.   

We are not close to our goal.  Pray for victory against this. Share our hope. Here is a beautiful article written by attorney Paul Ingrassia to enjoy and share. God bless you  

https://paulingrassia.substack.com/p/spaces-host-and-maga-digital-firebrand

Update #5
February 18, 2024
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Synucleinopathy syndromes are rare hard to diagnose slow killers that attack both the central and autonomic nervous systems, affecting every body system. 

Please share this opportunity to help Razi and thank you for the support you’ve given so generously. *We are not close to our goal.* Please pray  

Please read this beautiful article by Attorney Paul Ingrassia to learn more https://paulingrassia.substack.com/p/spaces-host-and-maga-digital-firebrand?r=ziuz9&utm_campaign=post&utm_medium=web

Update #4
January 19, 2024
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Many have asked how to support with CashApp instead of this platform. You can go to https://cash.app/$RaziBerry

Please continue to pray and share this link so that we reach the next milestone of $20,000 more to get started with treatment. 

Update #3
December 1, 2023
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We are almost 20% toward the 100k goal needed to get Razi two weeks inpatient care, transport to the clinic in Mexico, and the nurse companion/ advocate the clinic requires plus follow up care. She has had an increase in seizures and a new symptom of throat/ esophageal cramping so we keep our hearts set on the goal. Thank you to those who have so generously given! Keep Razi and her girls in your prayers! 

Update #2
November 11, 2023
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Thank you to everyone who has helped so generously so far. We are almost at 10% of our goal which if met will go towards a nurse advocate, transport to facility and first two week ( 12 day) stay and treatment. It will also ease the financial burden for her and her daughters. Thank you for your prayers! The most difficult part right now aside from weakness is the constant dizziness and painful convulsions that she experiences mostly throughout the night. 

Update #1
November 5, 2023
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Thank you for those that have donated so generously! We have long way to go to get Razi scheduled for treatment and to make transport arrangements as well as a nurse companion/ nurse advocate. Keep sharing the link and sending up your prayers. 

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