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Super Sadie Needs Your Help

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Queens, NY

On December 29th, 2017, 6-year-old Sadie of Queens, NY suddenly started having seizures that have continued every day since. The seizures are nearly constant and remain uncontrollable, despite an ever-changing cocktail of seizure and immune-suppressing medications.  She needs further specialized tests to get to the root of what’s causing these seizures. At the moment doctors are trying to determine whether or not she has a very rare and serious inflammatory neurological disease called Rasmussen’s Encephalitis. The disorder is progressive, mostly affecting young children, and is characterized by frequent and severe seizures, loss of motor skills, loss of speech for some, weakness on one side of the body, brain swelling and eventual paralysis on the affected side with decreased mental ability. If she is diagnosed with this disorder, the only traditional course of action is to sever the connection between the two hemispheres of her brain, leaving one side of her body weakened or disabled, in order to save her cognition. 

Sadie is fully aware of what is happening to her as her mouth twitches, her hand jerks and she has spasms in her left leg that at times are so strong that they knock her down. Throughout this extremely difficult year, now 7-year-old Sadie has been incredibly brave, extremely strong, and remains the sweet, special, and silly girl that she’s always been:  a superhero and a rock star!

Sadie’s parents want to do the best they can to be absolutely sure of what is causing Sadie’s seizures before deciding to do something as invasive and irreversible as a hemispherectomy, or any other surgical procedure. So far, insurance has covered almost everything, but now the next step is to take Sadie to other medical doctors outside of the hospital system in order to take a deeper look at what might be going on. This process will likely get very costly, mostly because of the amount of lab work required. They would greatly appreciate your help and any donations. All proceeds will go directly to the family to cover Sadie’s medical expenses, travel expenses, and any physical aids, tutors or therapies to help Sadie maintain her quality of life and keep her active throughout this long process. To read more about Sadie’s condition and see a video, please visit this New York Times article about her http://bit.ly/sadienyt  

The crowdsourcing has already resulted in some exciting avenues to explore that could potentially be very helpful or even life-changing, but we don’t have much time to lose! Please share Sadie’s story and this GoFundMe campaign!
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Donations 

  • Anonymous
    • $25
    • 4 yrs
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Organizer and beneficiary

Lauren Caban
Organizer
New York, NY
Sara Markel - Gonzalez
Beneficiary

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