Mckenzie Humpherys Medical Expenses

Hi,

I'm Stephanie Humpherys, mother to 8yr old Mckenzie Humpherys. She is the youngest of 4 children. The same week as Christmas (2022) I received a phone call from Mckenzie's neurologist informing me that the results from her lumbar puncture that was testing her antibodies for NMDA Encephalitis were positive again for the disease. This means Mckenzie has relapsed and is no longer on the recovery path. NMDA Encephalitis is a rare and uncommon autoimmune disease. Layman terms the body produces antibodies and those antibodies attack the brain. For several months we have noticed an increase in seizures including seizures while Mckenzie is sleeping. She is having more absent seizures, some focal ones as well. She struggles to remember people or events at times recently. As well as being unable to emotionally regulate. These are just several examples of the relapse being active.

With the recent news of her relapsing, it has been a priority and emergent situation per her doctor to restart infusions. These infusions will wipe out the antibodies that are actively attacking her brain. This has been devastating news for our family. With all this, our little girl has come so far since the beginning but is suffering from what the relapse is doing to her body.

Mckenzie is the sweetest most lovable kid you will ever meet. Her smile is so contagious and her fighter spirit is admirable. We don't know how or why this disease has happened to her but we have come so far and will continue to fight and keep the faith.

I have had to set my pride aside and accept help from others who have expressed wanting to help. It's very hard for me to ask for help and I usually just do what has to be done regardless of the hardship. We had a friend start a go-fund when this all began and the help we received was so helpful during that time we were in the hospital. This go-around Mckenzie may not be as bad off as she was when this first started but the costs of care have significantly increased now that at this time she has not been admitted into the hospital. That is very much a possibility with this relapse and the unknown is scary. The new year brings new deductibles, co-pays, gas, food and hotel expenses. We travel 2 hours for every appointment which can be 3 or more times a month depending on what specialist we are seeing. She has 3 that we see that all pertain to the diagnosis of this NMDA Encephalitis and are all located in Phoenix. My husband and I both work, but I have used all my sick time because I have to care for Mckenzie when she misses school. Depending on the type of seizure she has she misses 2-4 days at a time. We are having to set our pride aside and accept help from others.

The treatment as of right now is restarting infusions that she received when we first got the diagnosis of this disease. These infusions have caused her to be sick and her hair becomes thin and she gets bald patches. These medications she will be getting are the same ones cancer patients receive. As a mother, it breaks my heart that she has to go through this. She is a very faithful, God and Jesus-loving little girl. She is courageous and brave.

I apologize this is long but I wanted our story to be clear and transparent. We are so appreciative of any help we receive. We are willing to answer any questions. All funds received will go directly to all medical expenses related, doctor office and hospital co-pays, deductibles, medication co-pays, hotel, gas and food when we travel to Phoenix. Thank you for taking the time to read this, do not feel pressure to donate. We are happy with a share, and prayers. I know some people do not like sites like this to donate we do have zelle, cashapp, and venmo.

{Below you will find the background story of how this is all started.}

May 5th 2021 changed our family's lives forever. Mckenzie 6 1/2 at the time was sick on the school bus throwing up. I was informed to meet the bus at the bus stop. Once I got there and saw Mckenzie I knew something wasn't right but figured since we live in Arizona and it's hot, she was suffering from heat exhaustion or just didn't think enough water and playing in the heat at school. She was mumbling and making odd noises and didn't respond to me when I was asking her questions. We quickly drove home and as we were walking to the front door. I called her name several times and no response. I looked at her face and her eyes were darting side to side. I picked her up and ran her back to the car and drove to the nearest hospital to our home. Once we arrived she went limp and as I was yelling and begging for help in the waiting room with her limp body in my arms she went into a full grand mal seizure. Nurses and doctors quickly came, grabbed her and took her back. The memory of this day haunts me still to this day. Mckenzie was unresponsive for hours. We were transferred to the Childrens hospital after she was stable enough to transfer via ambulance. We were quickly admitted and the work of finding out WHY this happened to a healthy child with no history of any seizures or health issues began.

It took 2 weeks for every test the doctors and infectious disease doctors could think of to test for. All came back negative except for one test they did, and that was testing for encephalitis. It was confirmed and rated HIGH positive that she had autoimmune NMDA Encephalitis. During the time of testing, Mckenzie experienced numerous seizures. Each day her condition worsened with new symptoms. She lost her ability to talk, then had right side paralysis, uncontrollable facial twitches, lost the ability to eat and had a g-tube placed, lost her ability to walk, and use the restroom. All her EEGs they did that test the brain as well as MRIs she had all showed slowing of her brain and inflammation. Her left hippocampus was enlarged as well. Our little girl became catatonic and unable to communicate with us. This was the physical stuff, the mental part of all this was just as affected and altered her personality and made her aggressive and unable to regulate her emotions. Many infusions were given, medications after medications were given. Procedure after procedure done.

After the infusions were given we started to see her come out of the catatonic state and was able to be more stable in movement. The speech was still an issue and she could not walk on her own. We were transferred to Phoenix Children's Hospital in Phoenix for inpatient rehab. Where she relearned how to walk, talk, eat and use the restroom.

We were released in July of 2021 on the path of recovery but knowing this disease has lots of ups and downs. We accepted that and it's been a roller coaster ever since. Mckenzie had a period from the end of December 2021 to April 2022 she was free of anti-seizure medications and seizure-free. January 2022 she was able to attend school full time and became a part of the special needs program as her support while at school. She thrived and was doing great. She was having some issues with memory, speech and cognitive stuff but she was thriving. In April 2022 she started having seizures again. She was placed back on anti-seizure medications.

As you read in the beginning you see where we are now. With this disease comes not only seizures it also creates issues with her memory, word association, emotion regulation, and other things. This disease has also caused Mckenzie to start pre-puberty and is now on injections every 3 months to slow that process for at least the next 2 years. So she sees an Endocrinologist and sees a Psychiatrist for the emotional component of all this. As you can see it's a very complex disease and has a lot of layers to it.

To learn more about NMDA Encephalitis you can go to antinmdafoundation.org where you can learn more about this disease.

Also if you watch Brain on Fire on Netflix it is a great understanding to see what a patient with this disease goes through and how it affects them and their family.

Thank you again for taking the time to read this.