PANS and PANDAS Awareness Event - Aiyana’s journey with PANS & PANDAS

235 South Cayuga Street,Ithaca NY 14850

05 June, 2022

Description

This event is to help our dear friend's family raise money for their daughter, and to bring awareness to PANS/PANDAS medical condition I’m reaching out to you for your HELP! Most know of Aiyana’s, my oldest daughter’s condition with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) & PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections), and some do not. She recently going thru what is called a ‘FLARE’ with her PANS & PANDAS condition. This current journey has taken us back to Connecticut to get a kit and blood work done there, it can not be done here in NYS, because it is Illegal Too! Followed by severe OCD, Tics, Fear, and a complete change in her mind & behavior that day and the next morning, we had no choice but to admit her into Upstate Galisano Children’s Hospital ER. Were we knew, mostly Tammy, that this would be a battle to work with the traditional Doctor’s there vs the Specialist we have been seeing for the last 10 months. For a week we battle with Galisano’s Doctor’s until both our PANDAS Psychiatric Doctor (Dr K) and Medical Doctor (Dr B) were able to consultant with the staff at Upstate (Galisano). When this hit it’s peak this time last year my sister and brother help us set up a Go Fund-Me account to help with travel, medical, and miscellaneous expenses we were not planning for. Between the Go Fund-Me, other generous donations, and what we could save, we just about completely exhausted the money by the time Aiyana was admitted into the ER at Galisano on February 15th. This round we had family help with our basic needs, until we can go back to work. Aiyana’s journey with PANS & PANDAS we believe first peaked during the summer of 2018 when she just turned 13, were one of her doctors thought it might be PANDAS, but was never officially diagnosed until April of 2021 by Dr B…(I was looking to add more, but you know more details) Thanks to a dear friend, who is the director of Coltivare Jason Sidle, we are doing a benefit fund raiser dinner to help with the cost of medical, travel and miscellaneous expenses for future care for Aiyana and to Donate a portion to a PANS & PANDAS Charity. We are asking you to join us to bring awareness and raise some money for future care of our daughter Aiyana, which up until recently insurance has not Realy helped us with and had to pay out of pocket. We are hoping that if you're "local" you could come in and join us at Coltivare for this event. There will be food, drinks and information on how to help Jota and his family, as well as what we can all do to help ANYONE suffering from PANS/PANDAS. If you are not "local" please support the family by still purchasing a ticket. ALL PROCEEDS FROM THIS EVENT WILL GO TO HELP JOTA'S FAMILY, AND TO HELP ANYONE ELSE WE CAN!!