Hello, y'all! My name is Kristen Smith, and I'm a momma to my 3-year-old son Paul (buddy♥️). Baby Paul was diagnosed about three weeks ago with an invasive rare brain disease called Rasmussen's Encephalitis. It is a disease that eats and kills parts of the left or right side of the brain. The dead factors cause seizures that cannot be sedated with treatments or meds. There is no cause, and the only "cure" is brain surgery to remove the entire left or right side. Bud's left frontal lobe is damaged. He gets about five different kinds of seizures. He gets focal seizures daily (100+ seizures without meds, 20+ seizures without) and has had six tonic clonics since this journey started eight weeks ago. We have exhausted all of our options and now are a candidate for hemispherectomy. BIG OOF, RIGHT.

In these eight weeks, I have only been to work one day, coming close to running out of savings. Now, we have to move from the Inland Empire to LA immediately after discharge because all of his doctors, therapy and rehab will be out here in LA. Being in the IE won't be ideal for us if there's an emergency, and traveling back and forth like that for intensive rehab won't be good for him. So I am raising money to help us make that move and to take care of us for at least a month after discharge. The closer to CHLA, the better!

About eight weeks ago, he started to have random episodes that I had thought were caused by him eating something spicy. At first, these episodes looked like lip-smacking and drooling. Then they started to happen more frequently, so at that moment, I thought it was acid reflux. The next day these episodes had more symptoms like whole body shaking, eyes fluttery, stiffness, and blue lips. I took him to San Antonio Hospital for them to tell me that I was right, that it was reflux and that I was too worried. We waited for hours for them to send us home instantly.

The next day I rushed him to Loma Linda Children's Hospital, and they admitted us immediately. At this point, these episodes were happening up to 10 times in one hour. Turns out they were seizures. Buddy was getting 100+ attacks a day. They came out of nowhere at random and hit him hard. They instantly gave him emergency seizure meds such as Ativan. He was okay for 12 hours, and they started to hit hard again right after it wore off. They ran so many unnecessary tests like testicle ultrasound and blood transfusion. They finally put him on VEEG, and they finally catch the activity. Turns out he was having epileptic seizures. They then immediately schedule him for an MRI. Bud was then diagnosed with left frontal thinning epilepsy. Trying to come up with a cause was traumatic for me as a mother. Loma Linda doctors and nurses told me that since I had a high-risk pregnancy, there was a chance that he could've developed epilepsy in the womb. I felt like I couldn't have kids without messing them up. I felt like it was my fault. I felt my selfish desire to have my own kids put my child's life on the line, but it didn't make sense? They sent us home after a week with a med called Depakote. He was only having a few seizures before we left the hospital. Little did we know the severity of his case. A day after we got home, he complained about being itchy, and the seizures hit harder than ever. He had so many episodes I lost count. I keep a seizure log, and even then, I couldn't write every single one down because the clusters were clustering. He was not only allergic to the medication, but it wasn't working at all. I notice him more wobbly when he walks and his motor skills aren't how they used to be. So, I rush him back to Loma Linda. They admit us again. They put him back on the VEEG and started playing with different medicine. They run more tests like genetic tests and other blood/saliva tests. We then find out he is also on the spectrum for autism, but I had already suspected that. So now Loma Linda thinks these seizures could be autism and epilepsy-related. They then put him on Keppra, Onfi and Zonegran. They sent us home after five days. On the way home, he started seizing one after another. The doctors told me to give the meds a few days. I follow doctors' orders and wait a whole week. At the end of this week, the seizures have gotten significantly worse. Nothing was working. I felt helpless.

We rush him to Children's Hospital in Los Angeles and have been here since. Today marks four weeks of being here at this hospital. They admitted us a few hours after being in ED. The first week of admission, they tell us they're still waiting for Loma Linda to transfer their test results to them. So they take matters into their own hands. They put bud on VEEG and priority MRI. From false to accurate diagnoses, Rasmussen's Encephalitis was about to become our worst nightmare. They then run more blood tests, lumbar puncture, CT, PET scan, x-rays, and run treatments like IVIG, steroids and Rituximab. We are head to head with a monster, and we are losing. We have exhausted all of our options. Nothing is sedating these seizures.

Bud cannot walk on his own anymore, his motor skills and speech are going, and his right side isn't responding as fast. He struggles to feed himself. He gets frequent tremors. When he isn't having seizures, he's too over-medicated, spacey and just out of it. He takes emergency medication at least twice a day, and his daily med cocktail consists of five meds daily. There is no quality of life living like that. It's like having a 36-pound infant. He's bedridden. He tries his best to make the best out of it. He is beyond resilient and makes everyone who encounters him fall in love with his little soul. Who knew a 3-year-old could be my hero.

This disease is rapid. From the MRI from Loma Linda and the MRI from CHLA (which was a month difference), Rasmussen's Encephalitis took over a little more than half of the outer part of the left side of his brain. It can spread to the entire left side/core if we don't take care of it ASAP. We still need an FMRI and one more neuro test before we even decide to pull the trigger, which will get done this week since he is a priority. We don't know when, but one day, they might randomly tell us that there's an opening and that he needs to go NPO.

Right now, it's either he stays medicated, gets all these treatments and risks the 20+ seizures a day, OR we do hemispherectomy and deal with the deficits and be seizure-free. So he won't be okay for a long time, but that's okay. It's okay not to be okay. Since his left side will be removed, the deficits include paralyzation to his right side, speech and motor skill delay, depression, anxiety, difficulty with memory, loss of visual field, and infection. Since he is still so little, the chance of returning to 80/90% is high. We have to train his right side everything the left used to know!

SHOUT OUT, CHLA!

Every single neuro, neurosurgeon and epileptologist in this hospital is working on buds case. These nurses have been nothing short of amazing to not only bud but to us. They all go out of their way to check on him when they have time. The support this hospital has given us has been significant and will always hold a deep place in my heart.

We might be here for another few months, so they've been doing everything possible to make us comfortable.

Since we will be here for a few more months, it gives me time to look for a place. The market is hard to get into right now, so that definitely helps, and hopefully, ill get the keys to our new home before discharge.

There is hope in one hemisphere!

Thank you so much for everyone willing to help.

Buddy Strong♥️✨