Support this fundraiser
- Hi everyone, as some of you know, my husband Mark has been on a journey for answers to his medical issues. Well, he has been officially diagnosed with Stiff Person Syndrome (SPS). This is a really rare neurologic (and some say autoimmune) disorder that affects 1 in 1 million people. Mark’s condition causes severe and debilitating muscle spasms and stiffness in his abdomen and legs. It affects his walking and talking (depending on his stress level). Due to the sensitivity of his back and weakness in his legs, he is only able to stand or walk for a short time. He is on medication that helps keep the spasms under control. Since he will eventually build up a tolerance to the medication, he is taking a lower dose more frequently. It will most likely progress over time. SPS has no cure.
- Mark did not go to The Mayo Clinic as we first planned since they were not in our insurance network. To be better stewards of you generous donations last time, we opted for the Cleveland Clinic which was in our network. They ran several tests that had not been completed in Florida. We are still waiting for those bills . Both of his neurologists (local and Cleveland) want him to try a three part therapy that they expect him to need monthly. It will include steroids, plasmapheresis (removing bad antibodies) and an intravenous immunoglobin infusion (adding good antibodies).
- Due to Mark’s inability to stand or walk for any length of time, he will no longer be able to keep his job. We will be paying for Cobra insurance for him through at least the end of the year since he has already met his deductible and his coverage is better than mine.
- I am starting a new go fund me for anyone that would like to help Mark get his treatments since we have had several people ask how they can help. Anything is appreciated! We are both humbly and forever in your debt.
- Mark wants to thank all that have previously donated or prayed for him. He also wants to let his HCSO coworkers and supervisors know that he truly enjoyed working with them and appreciates all they have done for him.