Mom in need

Hi. My name is Jewels Cook-Kimble, I am a full time mom of 3 beautiful kiddos and a wife to an incredible man. Since having children I have spent the past 16 years in and out of Children's hospitals to ensure our oldest child more time on Earth ( Rainy was born with part of her brain on the outside of her head and other medical issues). However, during the last 16 years I developed a extremely rare and painful disease known as Sweet Syndrome. This disease causes painful blister like things to appear all over my body it has even been internal. The disease causes so much pain in my back when I am in the beginning stages of a flare, somedays I can barely walk. This also causes issues with my autoimmune system.

Last December, I traveled to the Mayo clinic in Minnesota to try to find a cure or a treatment. While there they ran a PET scan to rule out cancer, and as they were able to rule out cancer they were also able to find more problems including a hernia in the upper part of my stomach, bulging disc, more nodules in my lungs, a other disease that causes scarring in my lungs, my own brain disease (which we already knew about) Chiari malformation. There are a lot of things that need to be addressed and hopefully either cured or treated
The current situation with ongoing hospital stays and traveling and with the Mayo clinic wanting me to come back, all the medical Bill's piling up and now our only solid form of transportation needing work, we are reaching out to our community and asking for help , which we do not want to ask for the help but we have been encouraged to put a page together and swallow our pride.
Both my husband and I work outside the home which as of late has become harder for me but I am pushing through.
We truly understand that you might not be able but prayers for our family is just as valuable prayers for answers or an overall treatment plan. I have several appointments in St Luke's (MO) and KU medical. We have not yet setup anything with the Mayo Clinic, the last trip took everything out of my parents bc at the time I did not have insurance. I now have better insurance but it doesn't cover most of it and travel isnt costs and past medical Bill's are not covered
I am sharing some photos to allow anyone to be able to understand what Sweet Syndrome looks like the photos will not be able to explain the pain but I deal with it from the time the flare up starts til anywhere from 15-21 days