I am asking for help from our family, friends and community as my wife, Sarah Thomas, continues to battle CIDP, ( Chronic Inflammatory Demyelinating Polyneuropathy) a rare neurological/autoimmune disease. You tube has many videos that can explain this better than I can. She will need ongoing care, a single level wheel chair accessible home, and adaptive equipment for transferring her wheelchair so she can be mobile and independent. Her Neurologist says the nerve damage is permanent. The only help will be long-term physical therapy. Sarah may permanently require a wheel chair or other mobility aides due to the nerve damage already done. We hope that she will recover most of her mobility. Unfortunately, there is no way to know just how much she will recover. Only time will provide that answer. We current live in an upstairs apt with two flights of stairs. We need to relocate to a home that can be adapted to her needs before she can be discharged from the rehabilitation center. There may be additional cost for her care that will require financial assistance, however at this time we just have no way of knowing what that will entail.

Here’s what happened:

Earlier this year, Sarah started having tingling sensations in her toes and then her whole feet, like when your foot falls asleep. Except her foot never woke up again. The pain and numbness were constant. As winter turned into spring, her condition got worse. She was having issues standing, weakness in her legs, and the pain in her feet continued getting worse. She couldn’t move around the house without a great deal of pain and assistance from a wheel chair we bought to help out. She required help getting to and from the the restroom and preparing food. She required 2 people to help her up and down the stairs of the apartment we currently live in for doctors appointments. By the end of May she was bed ridden due to the pain, weakness and loss of muscle mass. She started having trouble eating and keeping any food down. We tried to take care of her ourselves. We took her to the ER, 3 times in June. We were sent home with pain and nausea meds and told to follow up with the neurologist. We set an appointment but were told that it would not be until the end of July when they could get her in. By July 5th, she was having issues swallowing, talking and was suffering cognitive issues. We realized that there was nothing they could continue to do for her at home, each day she got worse. I called 911 to take her to the ER hoping they could help her. She was admitted and the doctors promptly tested her for a stroke or heart attack. They found her suffering from malnutrition, severe dehydration, excessive muscle loss, pain in feet, legs and hands. They said that here was no way she could return home in the condition she was in. They treated her for pain and nausea. They did not diagnose her with any condition and told us to follow up with Neurology. After stabilizing her, they sent her to a convalescent hospital for longer term care. The doctors felt physical therapy and nursing care would help her recover. After a week, the doctor for the convalescent hospital realized she was not recovering but getting worse. By that point she couldn’t eat at all and was wasting away. She couldn’t stand, dress herself, brush her teeth, drink from a glass, hold her phone or use the restroom. The doctor sent her back to the regular hospital for additional evaluation.

After many days of observation, the hospital neurologist suspected CIDP. the hospital said they were unable to preform the test to confirm this diagnosis. The equipment to test for this rare condition is only available in a few Neurologist offices locally. The hospital said they could not send her for the test, they said she had to be discharged from the regular hospital to take the test to confirm this diagnosis. Sarah was too weak to be discharged. They put in a nasal feeding tube and replaced it three times. When that wasn't enough they preformed surgery to installed a g-tube type feeding tube. That's the kind that goes through the skin into the stomach. A week later they preformed emergency surgery to replace the feeding tube as the one previously put in had come loose and was leaking air into her abdomen. They treated her one time for CIDP, and she did improve a little. They would not repeat the treatment without a confirmed diagnosis. After about 7 weeks in the hospital, they got her stabilized and transferred her to a LTAC (long term acute care facility). She was there for 2 1/2 weeks and was again transferred to a physical therapy rehabilitation center closer to home. Since then Sarah has twice been sent to the hospital/ER for seizures. She has never had seizures in her life. Just one more thing to deal with.

As of 10/21/21 we finally received a definitive diagnosis. She does indeed have Chronic Demyelinating Polyneuropathy, and she has improved. Her Neurologist says the Inflammatory aspect has burned itself out, but could return anytime as there is no cure, the neuropathy (damage to her nerves) may not resolve or may only resolve to a point. Unfortunately, her doctor says if it had been confirmed earlier and she had received ongoing treatment, she may have not suffered as much damage as she has. Now, she will be dealing with ongoing neurological issues until the end of her life. What that all entails is simply unknown at this point in time. She may never walk again independently.

She is currently in a physical therapy rehabilitation center. She is able to swallow soft food on her own but still requires a feeding tube for now. She is currently working on standing and transferring to and from a wheelchair. As you can see in the picture she is working on hand grip and coordination, she is able to feed herself with a modified spoon. She tries to maintain a positive sprit and is well cared for by the staff there. We have high hopes that with time and diligent physical therapy she will continue to improve and eventually come home, when we have a home she can safely come to.

Sarah is only 43. She loves to craft, color in adult color books and crochet. She enjoys spending time with family and friends, playing cards and board games. She wants to improve enough to come home to be with me and our two sons, whom she loves very much. She is an active Christian and used to participate fully in volunteer activities with her congregation.

Please know that anything you give will be used to care for Sarah's recovery, care and our relocation. We need the funds as soon as possible so we can begin the relocations process.

Thank you so much for reading. If you cannot donate but you can share on social media that would be wonderful. She needs prayers too.

Thank you for your consideration and time.

Cyrus Thomas