Help Emery recover from FND and walk again.

Hi, I'm Amy, Emery's mom.

Emery turned 13 on November 4th, 2021. Three days later, she came down with a virus but continued feeling bad. Extreme fatigue, weakness, whole body pain and an overall feeling of being unwell. Two months later, after numerous doctor appointments, blood draws and consultations, Emery was diagnosed with a rare autoimmune disease. At this point we thought, now that we know what's wrong, let's get you on the proper medication and get you better. Then some unexplainable things happened. Emery lost the ability to use her voice, the widespread pain continued (despite steroids which usually provide quick relief from the pain of inflammation). Emery was depressed, in constant pain, and our instincts told us something was "off". We continued treatment, geting Emery into physical therapy to rebuild her strength and voice therapy to retrain her voice. Slowly, she began to improve. By the end of February, she could walk for 5-10 minutes, her voice was coming back, she was getting stronger, and the depression was less severe. She was still in pain, but trying to move forward.

In March the bottom fell out, literally. Emery started having difficulty walking, she was falling and dragging her feet. She said she felt like she was on a tight rope. It was such a shock to see this young athletic girl falling to the ground as soon as she stood up. I called her rheumatologist in tears! What is going on? Why can't my child walk? The Doctor calmly said, "I think Emery has a Functional Neurological Disorder. This is in addition to the autoimmune disease". WHAT??!! I had no idea what she was saying. For 5 months were on a path treating an autoimmune disease and now we had to pivot with this new thing.

As the month went on, Emery's mobility rapidly deteriorated. We could no longer support her and help her walk. She could no longer support herself and had to use a walker. Emery was also restricting food because she had pain and bloating every time she ate. She lost 13 pounds and was on the verge of a feeding tube. Her body was failing her. At the beginning of April, she has to start using a wheelchair full time. She started having uncontrollable full-body spasms and we went to the emergency department and were admitted to the hospital for a MRI of her brain and spinal cord. It was all so scary but also a relief to fast-track the MRI. We still weren't sure what a functional neurological disorder was. The MRI was all clear (a relief) but we still had many unanswered questions.

End of April, we finally got in with a Neurologist and it was officially diagnosed, Emery has FND (Functional Neuroligical Disorder), more specifically FMD (Functional Movement Disorder). It is extremely rare (i really hate that word now). The easiest way to describe it, it is NOT an hardware problem (the brain), it is a software problem (the brain and nervous system interpreting signals and communicating with the body). Treatment is a mixture of physical therapy (PT), occupational therapy (OT) and cognitive behavioral therapy (CBT) . The neurologist told us we could have a full recovery, which would be complicated and slow. The tricky part is that FND is rare, and few people know how to treat Emery and the condition. So we started looking into inpatient treatment centers. We felt Emery needed an intensive treatment plan.

Mid May Emery and I relocated to Cleveland, Ohio for her to start a 4 week inpatient program ath The Cleveland Clinic. Emery learned a couple of skills, but overall the program and service providers were not a good fit for Emery. We returned home, hopeful Emery would continue improving while doing the limited program they suggested.

Unfortunately, Emery has regressed, losing the skills and strength that she used to have. Recovery from FND is like a rollercoaster, Emery will have setbacks and gains. Time is essential. The earlier and more frequent the treatment, the better her chances for recovery. We are constantly researching new ideas and the best way to help her walk again.

We found a highly specialized FND treatment program in California. Emery and I will relocate to California mid September for at least two months. The program looks promising as they seem to stay on top of new findings and apply them through highly customize treatment centered around each patient. Unfortunately, insurance will cover little of the cost.

The support from family and friends has been amazing. We are constantly asked, "How can we help?". Donating to support Emery's recovery would be a huge help! All proceeds will go towards the program in California. We are very motivated to get Emery well and back to the normal activities of a teenager.