New updates

Firstly, I want to express my gratitude to everyone who has kept Jordan in their thoughts and prayers. It's been a while since I could say we're finally noticing some positive changes. On August 27, 2025, Jordan underwent a partial corpus callosotomy. During the 10-hour procedure, his incredible team successfully disconnected the anterior section of his corpus callosum using laser ablation. Jordan's recovery has been remarkable.

Jordan faced quite a challenge as he worked to recover and regain his strength and skills. I won't deny that it was somewhat disheartening to still witness spasms and drop seizures following the surgery. However, we understood and it was clearly communicated that this procedure was not intended to be a cure. It was only meant to help reduce the symptoms. Despite having that knowledge, you still hold onto a little hope that a miracle might happen.

Six weeks after the surgery, we had a follow-up appointment with Jordan's neurologist and neurosurgeon. We adjusted his medication, which has significantly reduced the near-constant drop seizures. This change has been particularly liberating because the drop seizures were the most physically harmful and greatly affected his independence and ability to enjoy being a kid. Although spasms still occur, they are much less frequent.

This past week, Jordan underwent another 3-day long-term monitoring EEG. The results were finally what we hoped for: Jordan was completely free of hypsarrhythmia! Hypsarrhythmia is the chaotic, damaging brain wave pattern he has had since the beginning. They also reported that Jordan has 70% less spasm activity. Spasms were the only type of seizure detected on the EEG.

Jordan also received a new diagnosis of Lennox-Gastaut Syndrome, described as "a severe and rare form of epilepsy characterized by multiple types of seizures that are often resistant to treatment. It typically develops in early childhood, between the ages of 2 and 5." Although this isn't the news we hoped for, I am reminded that it is merely a label for his condition. It doesn't restrict him or hinder his ability to keep progressing.

Where are we now? We have a break until around February, at which point we will conduct new imaging to assess what remains connected in Jordan's corpus callosum and decide if a full disconnection is appropriate. We also recently discovered that Jordan has a condition known as polymicrogyria. Polymicrogyria (PMG) is a brain malformation characterized by an unusually large number of small, poorly formed brain folds (gyri). It's not certain that this is the cause of Jordan's seizure activity, as individuals with PMG may not experience seizures. However, Jordan fits the profile, and this is something his team is also considering.

So keep praying and sending positive thoughts our way. As always- its much appreciated!

The Cybulskis