Toni DeSimone's Journey of Hope

Hi everyone,

Most of you know that my 48-year-old sister-in-law, Toni DeSimone is going through a terrible time physically. Her husband, my brother, Jim DeSimone has been doing everything in his power to get Toni the help she needs.

Their fight with an unknown rare disorder began after Toni's spinal surgery which took place in January of 2019. Post-op and ever since, her skin began to flare up in debilitating pain from head to toe. These "flair up's" are not your normal run-of-the-mill pain. This is debilitating, crying in agony pain that lasts 2 to 3 days at a time. The flare-ups come every few days and have increased in intensity and duration. Most of the time she is bed ridden and can't move. The slightest touch to her is agony, even the clothes she wears are painful against her skin. It has gotten to the point where Toni requires assistance with the most basic of needs.

The symptoms start with a severe temperature swing in her body causing an extreme rosacea-like appearance on her face. This is followed by intense bruising and modeling (a web-like appearance under the skin) and then the awful, debilitating pain. The photos we have of this transformation are shocking.

In the past 4+ years, Toni and Jim have sought the opinion of the best medical professionals they could find. From Tufts Medical, Mass General Brigham in Boston, to the best specialists they could find in our home state of RI. They have seen a host of specialists in dermatology, rheumatology, neurology, hematology… the list goes on. Each time they have been passed off to the next referral as none of them have any answers. You can imagine the mental state of mind someone might have after the lack of results with this much effort...not to mention the cost. At 48 years old, she should be living her best life but quickly any hope turns to a feeling of defeat. Her quality of life is almost none.

After seeking out all of these medical professionals in both RI and Boston, Toni and Jim thought of the Mayo Clinic, the best in the country. It was a tough application process but with the help of some very good friends, she was finally accepted to the Rochester, MN facility! The next step at this facility is more testing and procedures and, for now, those are done on an "outpatient" basis. This means insurance will not cover the cost of travel, hotel stays, meals etc. And, of course, more medical procedures and tests mean more large co-pays and deductibles. The search for medical help locally has unfortunately exhausted their savings. Although we are excited at the prospect of possible new treatments for Toni at Mayo, at the same time we are horrified at the thought of her being denied the chance of those treatments and possibly a better quality of life because of the huge cost of this journey.

As you can imagine given Toni’s condition, it is not easy for her to travel. And scheduling at the Mayo is complicated. We wish it all could be done in one trip, but that is impossible. This journey of hope with the Mayo Clinic could take a year or more of back and forth. It’s not cheap, to say the least. This Go Fund Me page, and with your help of any size, could help our sister, mother, aunt, cousin, and friend get her life back. And if you can’t help monetarily, that’s ok too. Please help to spread the word by sharing this page and most importantly, by keeping her in your prayers.

Thank you!

Jeannie