Life-changing Surgery for Satori

Hi, I am Heather Strider, aunt of Satori Kirsch and her mother, Charmaine Kirsch's middle sister.

Satori has suffered from a variety of health issues from birth, but in the last few years she has begun to have alarming and unexpected pain and orher increasing symptoms. She has since been diagnosed with Ehlers-Danlos Syndrome and more recently with a congenital tethered spinal cord, for which a surgery has been scheduled at the end of this month. I'll let Charmaine, Satori's mom and primary caregiver, share the rest of the details.

"Satori has been diagnosed with Chiari malformation and Intracranial Hypertension. In some cases these conditions are secondary to tethered cord and may be improved or fully treated by the tethered cord release surgery. It is our hope that this will be the outcome in her case. Although rare in the general population, all of these conditions are a common complication of her Ehlers-Danlos Syndrome.

Satori's surgery will be performed at Rhode Island Hospital in Providence by Dr. Petra Klinge, a neurosurgeon who specializes in treating this and associated conditions. This will require us to fly to Providence, RI from Western North Carolina, where we will need to rent accomodations for a minimum of approximately 2 weeks (if her surgery does not result in any complications.) We will also have to pay for food, a rental vehicle and associated transportation costs while there, along with any medical supplies and incidentals. At this time we simply can not meet the cost of these expenses, but this surgery could be life changing for her. However, in the last few years, we have already accrued much medical debt seeking answers, seeing many specialists and performing many tests. Satori became unable to work in March of this year, even after reducing her hours to part-time, and now must rely on family for support and much of her daily care needs.

As a family, our resources have been affected by her ongoing support needs, and we find ourselves reaching out to the community to get us through this time."

Any amount helps, and if you cannot give, please share this with your contacts. Thank you for your time.