Marie’s Voice

November 28, 2018

In 2015 my daughter Marie was entering 7th grade. She was very nervous over the summer prior to entering the new school. The first 4 weeks of school she skipped out on doing her homework and participation in classes. When I confronted Marie she told me that going to the Math resource room was making the other kids think she was not smart. During the fall Marie brought her grades up. She began to exhibit a high nervousness about school work. Dad had work shirts that had splatters of paint and oil stains. She would only wear those and a hoodie. We sought out a counselor to assist with her ongoing anxiety/depression due to school.

At Christmas she played a melody of songs on her clarinet showing a wonderful exhibit of her talent. In January, she exhibited slowness in responding in conversations. One time in a restaurant she could not tell me what she would like on the menu. We thought she was tired.

Marie kept mostly to herself, often going off to read 500-page Sci-Fi novels within two days. She was a sponge for knowledge. In March, she was writing a paper on unsolved mysteries for school re: Sci-Fi (aliens), wars, CIA and Nostradamus. She wrote an email to the teacher. The sentences were missing words and appeared incoherent so her teacher alerted us. Over the next 24-48 hours, my girl’s memory disappeared. She woke up to calling me a CIA leader to working with aliens as she studied this at school. I immediately called the doctor and he told me to take her to emergency room.

On March 10, 2016 our lives forever changed. Marie spent 12 days in the hospital as she celebrated her 13thbirthday. We had spinal taps and a myriad of other tests with a conclusion of possible Encephalopathy a-typical source. The only possible source mentioned untreated pneumonia virus at age 7. She then experienced multiple hospital stays to discover the correct medication fit. In the fall of 2016, encephalopathy with a-typical source was on her records as a diagnosis.

In 2017, we finished up the IVIGs and did two treatments of Rituximab. I reached out to Dr. Mooneyham (North Carolina), who was advising our team in Connecticut. We corresponded and Marie was improving but still had those delusional thoughts. We decided to make the move to North Carolina because this was the place where the medical experts were located and I hoped a breakthrough would happen there.

Marie is making strides on her recovery under doctor supervision. When it comes to this fight to have Marie find her voice, our journey is not over. She has been in the hospital now over a month to try another medication. Let me tell you never give up on that there will be a cure in our lifetime. Why Marie lost her memory is still a mystery.

Lastly, one night praying out loud, I concluded although my daughter does not remember me, let us still enjoy our days together. Learning to accept but still keep things moving is key. My Thanksgiving has come and gone as my daughter remains in the hospital adjusting to this new medication.

Please never give up. Your loved one’s spirit lives, as their voice might be silent during a long recovery to heal. I continue to research and learn along the way to assist doctors for my daughter’s care. My wish for anyone feeling like there is no hope, remember to be grateful for the small wins. Stay strong.

Best Regards, Lisa