Support Cali Neri's Fight Against Powassan Virus

Hello, I’m creating this GoFundMe on behalf of the Neri family and three year old, Cali Neri, as a friend who has watched this family fight so hard for their child. If you do not know Cali’s story and her fight, please read below.

The Neri family, of Saranac, continue fighting for their toddler daughter, Cali, who was bit by a tick soon after she turned 2 years old. The tick passed on something called Powassan Virus to Cali, which caused encephalitis, a severe brain injury, drug-resistant epilepsy, and multi-issue/organ issues that stem from Powassan Virus. In the words of Cali’s mother, Kelsey…

“The viral brain injury has unfortunately left her with a long list of physical disabilities. She is now a spastic quadriplegic cerebral palsy toddler with no head and trunk control, neuromuscular scoliosis, neurological bladder, drug resistant epilepsy, gtube dependent, and the list goes on but cognitively she is all there. She showed us with an eye gaze communication trial she still knows her colors, animals, family members and, like every other 3 year old, she wants to play and be included. I honestly thought the hospital stay would be the hardest part of our journey. The 6 months away from home, grieving the adventurous life we once lived. Never would I have expected the transition home bring the hardest part. The in and out hospital visits, everyone else moving on with life and expecting us to get used to our new life but honestly, the longer we are on this journey, the harder it becomes. We are desperately hoping the Complex Care Assistant Bill passes in NY before it’s too late and that we don’t have to add our beloved community and family to the list of things this tick pathogen took from us. I promise it’s not all doom and gloom over here. This girl has so much fight left in her, and when she lets out her beautiful dimpled smile and belly laugh, I know it will be okay. We are going to keep giving her our all and that’s why the continued support from everyone truly means so much to us. The weight of insurance denials, NY legislation, and her everyday health is heavy and every time someone donates and gives her access to treatments, physical therapy, and equipment to get back outside… it means more than I’ll ever EVER be able to put it into words.”

New York State does not allow for parents to be the paid medical caregivers to their minor children. This being said, and with the level of care that Cali requires, the Neri family has done everything and sold everything possible to stay home with Cali to care for her severe and intense needs. The Neri family has gone to Albany to fight for changes in medical care for children like Cali but they cannot wait forever. They must travel out of state constantly for the very specific therapies and hospitals that Cali requires to improve. These treatments are not covered by insurance. Travel, hotels, gas, groceries while on the road, certain medical equipment, items for basic quality of life for a little toddler who still just wants to be a toddler…these things are not covered by insurance. The severe shortage of in-home nurses that can even care for Cali properly means that her parents take 100% care of her with little respite, if ever.

I am asking our community to please consider sharing and donating any amount to support this family and little Cali Neri. As a parent, what lengths would you go to to care for your child? The Neris need us and we will continue to show up and fight, just like Cali has, and just like her family has.

If you would prefer to help with a specific bill, such as electricity, internet, phone, etc. or would like to drop off a meal to the Neri family, please contact Kelsey through the Facebook account for Cali: Courageous Cali

Thank you for reading - please share Cali’s story and this GoFundMe so we can support Cali.