Hi family and friends, I created this fundraiser because Olijah needs help getting a proper diagnosis. We believe he has been having seizures for over a year now and his condition is only progressing. We have been to several appointments, seen more than a handful of doctors, and our little warrior endured days and days of testing (EEGs, bloodwork, MRIs, Emergency room visits, etc). We still don't have answers as to what is going on and we haven't been informed on what to do next.

I have talked to several other moms of toddlers with epilepsy and they suggested that we go to the Mayo Clinic in Rochester MN because they have one of the best epilepsy centers around. They have newer technology and an epilepsy team that has seen and diagnosed rare and unordinary cases. Unfortunately, they do not accept our insurance and they require a $5000 deposit before they will schedule us. Then, depending on what testing and imaging they may order, it may be more. Traveling and lodging expenses would also be needed.

Olijah was born in Louisiana at 38 weeks with a somewhat traumatic birth injury. The last stage of labor was prolonged for 4 hours, which lead to him having partial asphyxia (little oxygen) for that amount of time. His heart rate decreased a number of times. Once delivered he suffered from a double nuchal cord (the cord was wrapped around his neck twice) and left shoulder dystocia. We were not told about the shoulder dystocia at the time. When Olijah was placed on my chest after birth he was not breathing. The medical team was able to get him to start breathing shortly after with some stimulation. He seemed to have made a full recovery without the need of supplemental oxygen. We were relieved. That night when trying to breast feed Olijah, I noticed he was not able to latch and unable to feed from a bottle. We were told that some babies were more difficult than others. The following day they told us he had high levels of bilirubin (jaundice) and he was then admitted for a few days of light therapy. We were discharged Christmas Eve which we were all excited about!

Around 2 months old, dad and I noticed that Olijah would sometimes wake up from a deep sleep gasping for air followed by a loud cry like he was hurt. From time to time he would have the startle reflex in a series of 2 or 3 and he would start crying afterwards. I brought these things up to his pediatrician at our following appointment and was told that he had silent reflux and prescribed famotidine to help. Time went on and my mommy intuition was still telling me something didn't feel right.

At 5 months old I noticed that Olijahs leg creases were different and his gluteal cleft was asymmetrical (crooked butt crack). We had an X-ray done and ruled out hip dysplasia. A few days after that appointment Olijah started to run a low grade fever accompanied by a rash and ended up tested positive for Covid-19. About a week into his illness he stopped eating completely. We had to syringe him an ounce of formula or pedialyte every hour just to keep him hydrated. At the time he was only intaking 12-15oz of fluid a day. He was sick for a total of 2 months and lost a pound during that time. After several doctors visits, and a trip to the ER he made a full recovery and was finally acting like himself around 7 months old.

During the time Olijah was sick we werent very focused on his development but more so on helping him get better. After he recovered that is when I noticed he wasn't hitting some of his milestones appropriate for his age. We discussed this with his pediatrician and agreed that he was just a little behind from being sick.

At around 8 months old we moved to Montana and thats when I started noticing more and more things that seemed off. I started researching like crazy looking for answers. Olijah would have jerky movements constantly throughout his sleep accompanied by weird eye movements. Sometimes these strong jerks would wake him up similar to what we saw when he was 2 months old but stronger and more frequent. It wasn't the normal jerking that everyone gets when they are dozing off to sleep and jerk themselves awake. They were constant and throughout every stage of sleep. Everyone kept reassuring me that all babies do the jerky movements but I couldnt let it go, especially since he seemed so distressed by them. I finally stumbled across information that lead me to believe he was having seizures (Myoclonic seizures). So I started recording Olijah all of the time to try to catch these episodes to show his pediatrician. I finally caught a few and reviewed them with his doctor and I was assured that since they were only happening in his sleep, that there was nothing to be alarmed about. Something still didn't feel right. I researched more and more and learned about every kind of seizure and how they present so that I would know what to look out for in case they were happening during the day without us realizing it.

At 10 months old Olijah started showing daytime activity that presented like a different types of seizures. Sometimes out of the blue his head would just drop and he would be upset afterwards (Atonic seizures). He would zone out, his pupils would dilate, and he was completely unresponsive (Absence seizures). His eyes would look up and to the right while tilting his head in that direction. This would almost always happen in a series. I caught it on video and we went straight to the ER. The doctor agreed it looked like a seizure. They admitted him and did an hour EEG the next morning. The test came back normal, meaning they didn't catch any seizure activity while he was hooked up. The Pediatric doctor on the floor noticed that Olijah had poor muscle tone (hypotonia) and a left hand preference. Come to find out babies aren't suppose to have a hand preference until around age 3. We had an MRI the following day which showed diffuse and a micro hemorrhage on the left posterior cerebellum with increased nodularity on the right ventricle leading to decreased size to the fourth ventricle. We were told it was of unknown significance and that wasn't the cause of his seizures. We met with the only pediatric neurologist in the state the following week which was 3 hours away. The neurologist was confident Olijah wasn't having seizures and diagnosed him with developmental delay and benign sleep myoclonus, meaning jerking in his sleep that doesn't cause seizure activity in the brain. He also ordered blood tests to check for mitochondrial disorders and some genetic testing. He ordered the Chromosome Micro-Array panel and tested for Fragile-X, which tests for common disorders and syndromes that have developmental delay. Shortly after our visit Olijah was enrolled in Speech therapy, Physical therapy, and Occupational therapy.

Olijah didn't crawl until 12 months and his physical therapist noted that he had right sided weakness with a preference to use his left side. He would transfer all toys to his left hand if given to his right and would try to get up from sitting to standing with only his left leg. He also was very behind in speech. He was very receptive but would never vocalize and had only a few words, mama, baba, and dada.

We decided to get a second opinion from an out of state neurologist that agreed to do a zoom call visit. She agreed that Olijahs night time episodes sounded like benign sleep myoclonus but urged me to get a video of his daytime activity. After finally capturing the end of an absence seizure she agreed he needed a 24 hour EEG. At 13 months Olijah did the 24 hour EEG which again came back normal. At his point doctors dismissed our concerns and kept reassuring us he was fine because he wasn't having seizures.

At this point dad and I felt discouraged and didn't know what else we could do to advocate for our child. We sort of let it go and were hoping the doctors were right and things would just sort of "resolve" on their own.

Olijah didn't walk until he was 16 months. At that time the therapists and I noticed that Olijah would keep his right hand in a fist and by his side. Right away I was told about the possibility of mild cerebral palsy but she wasn't for certain. We had an appointment with Olijahs first neurologist and expressed out concerns. He had Olijah grab for objects and walk for him and told us that he seems to be doing everything just fine. I knew though that if we wouldn't have been going to therapy several times a week that it would have been blatantly obvious.

From the time we had the 24 hour EEG to Olijah turning 17 months, his night time activity was progressing. Benign sleep myoclonus does not progress. I started looking up Epilepsy centers to find an epileptologist. We were able to get a referral to a center out in Seattle but not for two months. We felt loss without proper guidance from a professional during that time. I wanted to have all of my ducks in a row for the epileptologist and I found that a certain lab was doing free genetic epilepsy panels. I called the company and they said they would gladly fax over the order to my sons pediatrician to authorize. She denied it and told me to call my sons geneticist. I called the geneticist to express my concern of the progression in seizure activity and the nurse told us we needed to have Olijah be seen right away. She told me that a new neurologist just moved to Montana. Turns out he works in the same office as our first neurologist. He had the same demeanor as the first and dismissed our concerns and told us we needed a prolonged EEG. We didn't schedule with him because by the time Olijah could be seen for that EEG it would be around the same time as our appointment in Seattle and I would much rather the epileptologist read the EEG.

The following weeks were awful. Olijah started having clusters of absence and head drop seizures. He would have one and then the other and then would jerk in between. One day he had a cluster of more that 50. After a few days of clustering we noticed Olijah was acting very strange, he was alert but unaware. I was terrified that he was going to go into non-convulsive status epilepticus which is a medical emergency. Thats when they have seizures that are non-convulsive (myoclonic jerks, atonic which are the head drops or full body falls, and absence) and they cluster too close together which then doesn't give the brain a break or time to recover. That can turn into a continuous prolonged seizure that most of the time needs medical intervention to stop them. They can have high functioning altered awareness which can be very hard to tell in a toddler.

Over the course of the next month we had two 48 hour EEGs done and still no answers or direction on where to go. The doctors are convinced now that it is not true seizure activity but give us no alternate answers as to what it could be.

Olijah has started to regress in speech and has actually lost some words, which is not normal. We are still seeing daily clusters of staring spells and head drops accompanied by jerks of his mouth, head, shoulder, and fingers. His pupils are constantly huge. Olijahs episodes during his sleep have progressed and changed into clusters of stiffening of both his legs, his arm and leg on one side, or all four limbs. Sometimes he will have repeated crunching motions or extreme back arching. Each stiffening episode can last anywhere from 2-75 seconds and cluster anywhere from 10-60 a night. His normal heartrate while sleeping is 98-102 and right before an episode his heart rate will shoot up to 120-140, then he will jerk or stiffen, after the event his heartrate and oxygen both drop down into the 80s, all within a few minutes. In between each event Olijah will make chewing or smacking movements with his mouth (automatisms) or he will grunt or let out a strange brief cry. His eyes will deviate during some movements. After awakening from the clusters Olijah is weak and cant stand or even sometimes he cant move almost as if he is paralyzed. He will be inconsolable afterwards and act confused or scared. Within the past three days Olijah has started losing his balance and walks like he is drunk. He has started showing some of the stiffening movements and brief paralysis of his legs during the day.

We were recently told about SUDEP which per the CDC website states,

"Most, but not all, cases of SUDEP occur during or immediately after a seizure. The exact cause is not known, but these are possible factors:

-Breathing. A seizure may cause a person to have pauses in breathing (apnea). If these pauses last too long, they can reduce the oxygen in the blood to a life-threatening level. In addition, during a convulsive seizure a person’s airway sometimes may get covered or obstructed, leading to suffocation.

-Heart rhythm. A seizure may cause a dangerous heart rhythm or cardiac arrest.

-Other causes and mixed causes.

*SUDEP may result from more than one cause or a combination involving both breathing difficulty and abnormal heart rhythm."

That is also why we want to purchase a SAMI camera that is made for people with epilepsy. It is a monitor to capture and notify us in case of a possible seizure. The price tag on that camera is not cheap. Its over $1000.

We are lost and we are scared and we don't have many places to turn. We have been advocating for our son for over a year and still don't have answers. We are watching our sons health deteriorate in front of our eyes and we don't know what is happening or how to help him. Thats why we want to go to the Mayo Clinic to hopefully get a definite answer or at least pointed in the right direction to obtaining one. Nothing is worse than watching your baby suffer without the means to help.

Thank you for taking the time to read this and we really appreciate any and all help.

-Monica and Korey