We are Kristen and Jason Hale, the aunt and uncle of the sweetest boy, Rick Jaydon, who is just 1 year old. We are organizing this fundraiser on behalf of his parents, Rick and Alicia, so they can remain fully by his side and focus entirely on being with their son. There are no words for what they are facing right now, and our family is coming together to support them in every way we can.

This is their story:

On February 6th, just two days after we buried our unborn child Zachary, we noticed Rick Jaydon had spells where he would stare off into the distance for about a minute at a time. At first we thought he might be playing around with us, or that it was just a sign of fatigue, but by the next day he started having eyelid fluttering, left arm jerking, lip twitching, and several minutes of inability to use his left hand after coming out of what we then knew were seizures. We immediately took him to our local ER, where they said he was likely having focal seizures, and were told to follow up as an outpatient at the University of Iowa Hospitals and Clinics (UIHC) on the 9th for an EEG to watch his brainwaves. By the following morning, he had over ten seizures that were lasting longer and he was taking longer to regain use of his left side. We immediately drove to Iowa City and were admitted to the UIHC Stead Family Children's Hospital Pediatric Intensive Care Unit (PICU). He rapidly progressed to having up to over 80 seizures a day despite the use of 9 different medications to try and stop them.

Over the next 2 weeks, genetic testing came back with a diagnosis of Tuberous Sclerosis Complex, "a rare genetic condition that causes tumors to grow in many different organs of the body. Tumors grow most often in the brain, skin, heart, eyes, kidneys, and lungs...the disease involves severe health problems that present early on in life. More than 50 percent of those who have epilepsy have seizures that do not respond to standard medication. Many children do have some type of developmental delay, learning disability, or behavioral problems. Autism spectrum disorder is one of the most common developmental disorders seen in children with TSC, affecting about 50 percent of patients"(Boston Children's Hospital). It is a lifelong condition that requires frequent monitoring and treatment. Unfortunately, Rick Jaydon falls into the category of not responding to standard medication.

He was started on a ketogenic diet and a specialized medication for TSC without improvement. After multiple tests and medication trials, including a special EEG where they surgically put 14 electrodes through his skull into his brain, it was determined that he needed to have a portion of his brain removed. During the 7 hour surgery, they opened up his skull and surgically removed 1/10 of his brain matter on his right side. He returned to the PICU on a breathing tube and was heavily sedated. The next few days we waited anxiously as the breathing tube was taken out, and seizures returned, but at a much lower rate. They continued to grow in length, and in less than 24 hours he was experiencing status epilepticus. "Status epilepticus (SE) is a medical emergency defined as a seizure lasting longer than five minutes or multiple seizures without regaining consciousness in between. It causes prolonged brain activation, potentially leading to brain damage, cardiac failure, or death" (Johns Hopkins Medicine). We found ourselves back in the PICU, breathing tube back in, and multiple new medications for seizure control and sedation in place. Over the next 6 days, he developed pneumonia, a cold, and thrush and continued to have seizures as he fought the sedation. Eventually, the team decided seizure freedom was unattainable, and weaned off the sedation. The breathing tube was successfully removed, and he continues to need respiratory support and new medications to help offset the ones he was weaned off of. In the last 48 hours, he has had a significant increase in the number of seizures, and has experienced status epilepticus once again. This morning the team reported there was little hope that any new medication would reduce the number of seizures he is having, and that surgery options are either to sever the connection between the right and left sides of the brain (hemispherotomy), or to remove one half of the brain (hemispherectomy).

At this time, due to the severity and complexity of his condition, Rick Jaydon’s medical team is recommending a second opinion at a different hospital across the country. This next step will likely require additional travel, extended time away from home and their two daughters, and ongoing medical care that will be out-of-network with their insurance, resulting in significant additional costs, adding to an already overwhelming situation for their family.

We are asking for support to help ease the financial burden of medical care, travel, and time away from work so Rick and Alicia can remain fully present with their son. Any contribution, no matter the size, and any sharing of this page means more to our family than we can express.

All prayers, positive thoughts, and good intentions are appreciated as they continue to navigate the unimaginable.