Hey friends!

On September 5th, 2023, my son Miller, who had just turned 2 years old, had his first bout of stroke-like symptoms, accompanied by the onset of seizures. He was life-flighted to CHOA Scottish Rite, where he spent 8 days intubated while he had 30-40 seizures a day, until we found a medicine that worked for him. He was found to have a condition called Sturge Weber Syndrome, that is causing the seizures and stroke like symptoms and weakness. After 2 weeks, we were sent home. Since then, he’s continued to have seizures anywhere from every 4 days to every 2-3 weeks. We have switched medicines countless times, so he is now considered to have medically intractable epilepsy. We have had multiple doctor appointments, trips to Atlanta, trips to our local ER, and lots of emotions. Due to that, the next step is surgery. We are facing two options. The first is a craniotomy, where they would go in and remove a small portion of his brain that is “wreaking havoc” and causing the seizures. This would, prayerfully, leave him with all of his functions intact. The other option, is a hemispherectomy. This would disconnect half of his brain, and leave some pretty severe side effects and recovery. The usual standard with Sturge Weber Syndrome is a hemispherectomy, but our wonderful surgeon wants so badly to fix this with only a craniotomy (partial hemispherectomy). So, on August 13th we are set to have an SEEG procedure done and at least a week in the hospital to gather more data and see if we can do a craniotomy. He will then have the probes removed and we will have more answers to what kind of surgery is next. There is also a high risk of bleeding during the SEEG placement due to SWS causing extra blood vessels, and that could lead to another PICU stay, and a lot of other things, because an SEEG has not been done on a child with SWS.

Due to the, at least, 2 surgeries coming up, and countless trips to Atlanta for pre-surgery scans and costs for medicines, therapies, and medical bills, we have humbly decided to ask our friends and family for help. We have been and will be out of work for weeks at a time, and will have expenses and necessities that I don’t know how we will afford right now. If you can’t afford any donation, please just pray for us. Our prayers can move the hand of God.

Also, my Venmo is @juliegwaters if that is easier.