Hi everyone, we are the McBrayers. We would love to introduce you to our family. My name is Lorie, and I am a wife, mom of 4, and a registered nurse. I have been an RN for 12 years and love providing care for my patients. Unfortunately, 2 years ago I had to take a step back from in-person care and now work from home as a remote monitoring nurse. This was mainly in part due to Tobias’s diagnosis with Sturge-Weber Syndrome and Epilepsy. Working from home has allowed me to provide for and care for him and our other 3 boys. My husband Bobby is a police officer for the Muscle Shoals Police Department. He loves his job. He is on the Motor Unit (Motorcycle) and the SWAT team. We have 4 boys: Traceson (12), Roman (9), and Tobias and Titus (6).

On January 7th, 2022, Tobias was at home with his father and twin brother when he went unresponsive. He was eventually transferred to UAB Children's Hospital, where it was noted that he had, in fact, had an atonic seizure that caused him to go unresponsive. He had an MRI where they were able to visualize an abnormal malformation of blood vessels on the surface of his brain (leptomeningeal angiomas). As a result, he was then diagnosed with Sturge-Weber Syndrome Type 3. This was just the first of many diagnoses to come. Just to name a few: Sturge-Weber Syndrome, Epilepsy, Intersitial Lung Disease, Hypoxia (requiring home oxygen), Asthma, Right Hydronephrosis, Cervial/Thoracic Syrnix, Todd's Paralysis, Stroke-Like Episodes, ADHD, and developmental delay. This is in not all of his diagnosis but should provide some insight into his life as a medically complex child. He went from a normal, and happy 3-year-old child to a now 6-year-old who is more familiar with hospital staff than kids his own age. He has no problems sitting through MRI, PET Scan, or CT. He is a pro at using his oxygen concentrator and tanks; as well as taking all of his medications. He is what I like to call the MVP of Patients.

Now skip to where we are as of today: Tobias has been in testing at Johns Hopkins for the last 2 weeks. We met with several specialists and providers who determined that Tobias is a surgical candidate as he continues to have seizure activity while maxed out on 4 medications. The doctor stated that he is experiencing almost continuous activity while asleep and very frequent when awake on the left side of his brain. It is believed that all of his oxygen desaturations are a result of experiencing so much seizure activity. The neurosurgeon noted that he is having mini seizures that were just strong enough to disrupt his breathing but not producing outward signs. They also now believe that many of his learning difficulties are attributed to the amount of constant seizure activity he is experiencing in the left side of his brain. So now we are preparing to move forward with Brain Surgery. This word alone is scary in so many ways to me as a mom and a nurse. We are now beginning the process of moving forward, as this is the best option for him at this time. They have allowed us to return home to Alabama and await his further testing here at UAB Children's Hospital. He needs a new, up-to-date PET scan with EEG (while in the scan). The team here will then forward those images and readings to Johns Hopkins to help create a more thorough and in-depth visual of his brain. The plan that was mentioned at this time is to do a resection of the left occipital and parietal area of the brain, as this is the location of his Sturge-Weber. Then they will hook him up to an internal EEG and verify if they were able to get all of the epileptic area/Sturge-Weber area. Ideally, this would be the goal. However, he has some frontal discharges that they are concerned about and are hoping that it is a result of the posterior portion affecting the frontal area. If there is further issues we would then make the decision to come further up if needed. Neuro team seemed pretty confident that this surgery could alleviate his oxygen issue, epilepsy, and potentially help his learning. We, of course, are in the waiting period and will know more on the risks and side effects after they review his awaiting scans/mapping. So now we are preparing for surgery as soon as 6-8 weeks. We have worked very hard to cover all expenses ourselves, but at this time it is truly hard. His multiple specialist visits, travel out of state, medication expenses, and missing work have placed a financial burden, as to be expected. We will be in Baltimore/Johns Hopkinsfor around 2 months after surgery to allow time for healing and rehab before being allowed to return home to Alabama. Truly, thank you for allowing us the opportunity to introduce you to our family and Tobias’s medical journey.