Marina's Scoliosis Journey

Hello Everyone,

So this fundraiser is for my amazing niece Marina and her mother Laura. When Marina was born Laura found that she had Neurofibromatosis type 1 (NF). With this diagnosis there are lots of different possible outcomes and so life began with knowing and making sure to always keep on top of her care. Until the fall of 2020 it has not meant a whole lot, originally it started as a complaint about pain. When the doctor advised an x-ray suddenly our world shut down, Covid took over and there was a delay in determining what was going on. When she was able to get her scans there was no question she was diagnosed with Ideopathic scholiosis. She had already been connected to Boston Children's Hospital through the NF clinic that they run. This time it would prove to be very important, after additional scans it was found that the curve in her spine was severe and would require surgery as soon as possible. It was also determined that there were neurofibromas all along her spine and so she was scheduled for surgery.

Through out this Laura has worked for the VA in Connecticut and has had to use her time off for not only her health issues but for all the appointments that required them to go to Boston. Without the option for paid time off the question now is how to keep and maintain their home and what is needed. As a federal employee she does not qualify for the Massachusetts paid family medical leave and her short term disability coverage will only apply if she was out of work for her own illness.

Our family has always believed in the concept of "it takes a village". It can be seen by the way we grew up and the way we view who our family members are. This request is being put out there because we are trying to figure out the best way to allow others to help. I will also be setting up a meal train and will update this with the website once I have. If you can help we thank you if you are not able to we ask that you keep Marina in your thoughts and prayers.

Jackie