The Rule Family

It’s been difficult to figure out a way to summarize, describe, and in a way “announce” the circumstances the Rule family currently is experiencing. I’ve sat for the last hour waiting for the words to come. They have not. Words are cheap when it comes to summarizing such things. I can’t do it justice.

Brock and Jessica welcomed sweet Rocky into their family on January 8, 2023. They had noticed slightly low muscle tone with Rocky’s head control around 8 weeks, so they decided to pursue a precautionary EEG to help confirm he was indeed healthy. The EEG came back normal. They were so relieved.

However, a few weeks after his EEG, Rockwell contracted a respiratory virus that landed him in the Sacred Heart Children’s Hospital in Spokane for a few nights. He was put on oxygen, was severely dehydrated and was not eating. During this time, Jessica stayed in the hospital with Rocky and Brock stayed home with Braxton who also had the same virus (but was provided oxygen at home).Amidst this already stressful time, Jessica noticed subtle signs of potential infantile spasms in Rockwell while at the hospital. Braxton’s neurologist was able to come to see Rocky and had another EEG conducted before his discharge.

As the Rule family was celebrating a discharge from the hospital and getting to be home together (with both boys still incredibly sick and on oxygen) - they received a phone call from their neurologist with unimaginable news.

Although Brock and Jessica had done extensive genetic research and been told there was no hereditary/genetic cause identified - Rockwell’s EEG was showing abnormal brain activity which confirmed infantile spasms. The neurologist expressed concern that Rockwell was headed in the same direction as his older brother.

The word “heartbreak" doesn’t do it justice. "Devastation“ doesn’t either. There are no words. I feel the family was prepared for any other diagnosis other than this one. Perhaps it’s because it was the furthest thing from our wildest dreams that could be happening.

Picturing themselves in the same experiences with their newest child felt like too much trauma to bear. It feels cruel. There are many layers of stress and disappointment.

Rockwell immediately started a round of a very strong steroid dose treatment. The treatment plan was to go with a heavy dose for a short amount of time to suppress seizures and the brain damage that occurs with them.

The spasms were caught about one month earlier than Braxton’s were. This makes the family hopeful that perhaps they will be able to stop the seizures sooner and make a greater difference in Rockwell’s quality of life.

Two weeks of Rockwell being on steroids has been incredibly difficult for all involved. When a child is on this high of a dosage - it results in an incredible amount of crying, feeling constantly hungry, and lack of sleep. An NG tube was placed so that the administration of the steroids would be easier on all of them.

His two weeks of planned steroid treatment were completed on Monday, 4/17. He had a third EEG on Tuesday, 4/18. For the first time this month, the family was given the good news that the EEG showed promising signs that the steroids had made a great difference. The steroids had done what they had hoped and the neurologist was honestly shocked by that. Praise God. A follow-up appointment will be in 6 weeks for another EEG. They are starting to taper his steroid dosage over the next 30 days. They will continue Sabril for now which is a medication that suppresses spasms and seizure activity. Future expectations for Rocky remain unclear. Now, only time will tell how Rocky develops, and what future challenges lie ahead.

I think this is where I struggle to find the words the most - trying to somehow figure out how to inform everyone of what they currently are going through mentally, emotionally, and physically.

It's difficult to imagine how incredible the hardship must be to parent any child that has a poor prognosis and medical complexities. To have two children with these circumstances is beyond relatable. It’s isolating, painful, and so overwhelming.

The amount of medications, special needs, appointments, equipment, and decision-making is debilitating as they try to do any sort of normal, everyday thing. Getting out of the house is nearly impossible, and finding someone who is medically inclined/experienced to care for their children is difficult. Braxton requires 24-hour care and Rockwell is now also requiring much attention due to the side effects of treatment.

During this time we ask that you help us support this family with such extraordinary circumstances. Their biggest “need” and request is for prayer.

We pray that God would be near in a way that they can feel him in every sense and not question his closeness. That they would be made aware of His care and plans for them. Pray that He would steady their imbalanced, spinning world. Above all, he would perform a miracle and heal.

If you’re anything like me - I am SO desperate to do something to physically help them as well. We are past the point of wondering if they need help. We KNOW they need help and we need to wrap around them as their village.

The chance of having a child with EIEE (according to stats) is 1 in 100,000. So they had 0.001% of having ONE child with this. After genetic testing, the belief was that Braxton had a spontaneous mutation and that his condition was not likely heredity. However, they now have TWO children suffering from epilepsy. Braxton and Rockwell may bring light to a lot of research on this disease that doctors still know very little about. They have started on a very extensive genome study that no doubt will be extremely expensive. However, the expense would be worth it to not only shed light on helpful treatment for these boys but also future victims of this disease.

They also hope to get Braxton and Rockwell to a hospital with level 4 Epilepsy Care. Currently, Seattle Children’s Hospital is the only place in the PNW--another undoubtedly large expense.

Family and friends are in the process of setting up in home nursing care, lawn care, house cleaning, grocery deliveries, etc. Meal delivery services such as DoorDash, InstaCart and GrubHub are also super helpful for them if you’d like to gift them gift cards to those apps as well.

We so appreciate you joining us in caring for this family.

Please do not hesitate to reach out to their family members to hear of more specific ways to help - however, we do ask that all respect Brock and Jessica’s time by not asking follow-up questions with phone calls and messages. The task of responding is honestly just too much at this point as they try to balance new care routines for the boys, their jobs, and finding rest when they can. We will continue to update this page as information comes forward and/or additional ways to help/give.