Support Nikki Marie's Fight Against CRPS

Our Names are Marla Stagliano and Rachel Mathy we are raising money to help our wonderful friend and hair stylist Nikki Marie. Nikki is the kindest and most charitable person I know. She’s always willing to lend a hand to help others in her community. She has given away multiple free haircuts, done multiple charity events for the community, has helped collect items for multiple family’s in our community that have lost their homes to fire and raises money and supply’s for the local humane society’s she loves animals the lists go on and on. I don’t think Nikki had a selfish bone in her body. Nikki NEEDS OUR HELP.

Nikki was recently diagnosed with an Autoimmune Disorder CRPS after a needed foot surgery never quite healed right. We live in a small area where none of the doctors are experiencing with this condition and she has had to seek treatment and help outside of the area. Here is her story

Nikki was Born with bilateral club feet and tibia distortion. Casted at birth. Has had multiple surgeries and was in and out of a wheel chair up til the age of 5. Nikki was told she could never walk and she proved them all wrong she’s a very determined individual. At 16 she had an Achilles lengthening surgery on the left foot. Nikki has had many problems with her feet over the years and on 1/4/23 she has a very extensive reconstruction of her right foot, Naviculocuneform arthrodesis and a Triple arthodesis. It was suppose to be a 6 week recovery and back to start walking. After 6 months of still not being able to walk or work and seeing doctors from Albany to Rochester, they diagnosed her with CRPS. Complex Reginal Pain Symdrome. In this process they also learned she was allergic to the titanium they used in her foot and had to go back into surgery June 14th to remove the titanium, thinking this would also help the issue. After trying to get a second opinion ANYWHERE she was told every where that because of liability no one would see her until a year after her surgery. In this time she researched to find a CRPS specialist since it is so rare no one around her specializes in this disease. After finding the best doctor who specializes in CRPS, setting up an appointment for after the 1 year mark, we finally had a plan in action. A series of 3 spinal blocks and steroids injected into her spine around the L5. A letter was sent from primary stating the medical necessity for her to be seen in NYC and the hospital received an approval code from the insurance company to start the procedure series (something they would not of done the procedure without by the way) And Now the insurance company is stating that approval code never existed and that she was-out of network and nothing will be covered, after having 2 shots already. Each shot is about $8000. So now Nikki owes 16,000 dollars and still has to pay another 8,000 for the last shot in the series. There is no one in network that knows anything about CRPS in our area and her primary care doctor even said she needed to be in NYC because they didn’t have the resources to handle this condition in our area. It’s a very rare incurable disease. If they can get it into remission the chances of it spreading lessens and she may be able to live pain free. Right now she lives in pain 24/7.

Please I’m asking for your help. Let’s help this person who is always willing to do anything for everyone else around her and continues to do anything she can for them even when she is dealing with all of this herself.