We have detected that JavaScript is currently disabled. CaringBridge is best viewed with JavaScript enabled.

Morgan’s Story

Site created on April 17, 2014

Welcome to our site for Morgan. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time. Morgan's first seizures happened not long after she was born. She had roughly a dozen while she was in the NICU which tapered off after becoming well enough to come home. She developed infantile spasms- a specific type of seizure - at 8 months old. After the attempt to stop the infantile spasms failed, and as Morgan began to have regular tonic seizures as well, she was diagnosed with epilepsy. That battle for seizure control lasted months and ended when we were fortunate enough to find a combination of medications that worked for her. Topamax and Trileptal. As the years passed, anytime we saw break-through seizures, her neurologist would adjust her med doses and Morgan would be back to living mostly seizure free. Her epilepsy well controlled. Until now.

Since the end of July, 2023, we've seen more break-through seizures. As usual, we worked with her Neurologist/Epileptologist to adjust her meds. The first adjustment failed. So we adjusted again. The seizures began to escalate. We adjusted again to no avail. The seizures continued to escalate. We adjusted again. 4 med adjustments later, and the seizures still didn't respond the way they had in the past. Then, on Oct. 16, 2023 Morgan had a dangerous cluster of seizures, 10 short tonic seizures in less then 3 minutes. To keep Morgan from going into status epilepticus, I gave her the seizure rescue medication for the first time and called 911 for respiratory depression. It was the first time watching Morgan being taking by EMTs the the hospital. I followed the ambulance up shortly after.

Since then, Morgan has been in the ER 3 more times for seizures. She was admitted to the Neuro Trauma Unit in October for 9 days and November for 6 days. 3 new medications have been attempted, and all have failed in rapid succession. We pray that we can find a solution for Morgan.

Each night, Morgan has between 5 and 23 seizures. Most happen in dangerous clusters, needing rescue medication to stop them. Each morning, she recovers by sleeping the morning away. She's unable to attend school until we can get these dangerous seizures under control.

Newest Update

Journal entry by Morgan Marcario — May 1, 2024

We are home and exhausted. Morgan has dark circles under her eyes and looks too skinny. We had a virtual follow-up visit with her Epileptologist. Were happy with the progress. She's gone from 20-30 seizures a day to 6 or 7. We're still working on full seizure control. The crazy thing is that seizures was our number one problem next to UTIs. Now it's a concern, but her overall health is more worrying.

Her heart rate is back down. Today was restful. She's still too stuffed up to use her cpap effectively.

The Make-A-Wish Foundation found a contractor for Morgan's wheelchair accessible backyard garden. We sent them measurements of our yard and now wait for the next step.

Read More of the journal titled "May 1, 2024 - Home... Again"

Patients and caregivers love hearing from you; add a comment to show your support.

Help Morgan Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Morgan's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser

Support Links

Helpful Requests

Go to Ways to Help