Sorin Skye Parmar

Sorin was born with a genetic mutation (myopathy...congenital fibre disproportional) that has left her bed-ridden for life. She has a tracheostomy and ventilator for life support and is fed via a G tube. Sorin is completely dependent on technology and is immobile, hence having a hard time breathing on her own, requiring constant suctioning of saliva to avoid blockage of air in the throat.

With constant support needed to keep her going, we have been single income for many years and with two other boys, the bills have caught up to us. Thus, we are fundraising to help with the medical bills and provide us the service to help look after Sorin!

Your donations will help and has already helped purchase the following:

The bigger cost things Sorin requires are

Sorin was born in South Korea on December 1st, 2019...and was devilered blue and hanging on life by a thread. She did not make a single sound during her arrival in the hospital. With several doctors running in and out of the emergency room trying to figure out what was going on, I (father) was brought into the room while communicating with the Korean language I know best to my knowledge, that she needed to be rushed to the NICU. I was frozen in time and quickly said 'yes'. Off Sorin went to the NICU at Inha University in Incheon, South Korea.

Turn of the new year to 2020 and covid struck. Sorin was in the hospital till June, and we (parents) barely got to see her as much as we'd hoped to. But the doctors kept doing several assessments to figure out what was going on. With her fragile condition, she was in an incubator for quite some time, but no sooner, she was already under the knife to perform an operation (tracheostomy) to instill a tube in her throat that allowed her to breathe. Except, she was not breathing on her own, and will continue to struggle to do so. Then came the G tube, which feeds her through a tube.

After a muscle biopsy, which occurred a few weeks after her birth, we understood her condition. Her muscle fibres, mainly actin, is kind of non-functional. Meaning, that it's destroyed and cannot operate like mine and yours do, which creates movement and allows us to breathe/eat on own our accord. Thus, Sorin struggles with all daily functions that we do.

Sorin needs constant suctioning because she cannot swallow, her salive can build up around her mouth and inside her throat. She requires medical assistance 24/7, with a monitor that tracks her heart rate and oxygen level. Any time she falls below her 'danger zone', it could end her life, if she is not tended to right away.

We want to give her the best life possible, but have struggled over the past few years being single income for a few years. Having two boys and trying to raise them...the bills have caught up to us, hence the creation of this fundraiser. My goal is to raise as much so that we can get her accommodation that's accessible for her needs. Our options are very limited and restricted. So we appreciate all that you're able to donate during these tough times that I'm sure we're all experiencing in some capacity!

Please and many thank yous for supporting Sorin!