As many of you know Pressley was recently diagnosed with the Miller Fisher variant of Guillain-Barre Syndrome, a rare, acquired nerve disease that is characterized by abnormal muscle coordination, paralysis of the eye muscles, and the absence of tendon reflexes. Only one in two million people are diagnosed with this rare disorder.
Before she got sick, she was vibrant, outgoing and incredibly advanced beyond her tender age of two. Even sick, she still is. From the moment she arrived on this planet, she was alive and alert with her eyes bright and her smile infectious. She walked at 10 months and was using sentences by age one. She is like every other toddler – gregarious, bossy, gentle, and precious. However, she is also unlike any other; she’s is special. If you know her, you understand why, she grabs the hearts of everyone she meets.
Having a child with Miller Fisher brings many challenges, one being a large financial burden. Pressley has been in the hospital for two weeks and counting, including a stint in Intensive Care. When she is finally stable enough, she will be transferred to an inpatient rehabilitation facility where she will need to relearn how to lift up her head, sit up, and eventually walk. Much of this treatment will not be covered by insurance.
And since Pressley is only two, Erin, Pressley’s mother, is by her side 24/7, unable to work. For any family, losing half of your income in stressful, but to have to worry about how you are going to cover medical expenses on top of that increases the stress level tenfold.
To help with the financial burden of Pressley’s uninsured expenses, a fundraising campaign in her honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible, are administered by HelpHOPELive in the Southwest Catastrophic Illness Fund, and are administered by HelpHOPELive for illness-related expenses only. Please consider a contribution or a monthly pledge.
Thank you for your love and support. Please make sure to check this webpage frequently as we will be planning some fundraising events soon. If you would like to volunteer to help, please do not hesitate to send me an email or give me a call.
Jillian Ruppenstein, Pressley’s Friend
jruppenstein@gmail.com
415.310.0678
