Little Luci’s upcoming Hemispherectomy

Luci Hooks, my adorable little cousin, was only 4 years old when she experienced her first seizure on August 16, 2022. Now, she has between 7 and 10 a day.

After much testing, Luci was diagnosed with Rasmussen Syndrome, a rare inflammatory neurological disease which causes frequent seizures, neurological problems, and a gradual mental decline in children. Luci has had over 10

EEGs, receives IVIG infusions monthly, and takes 15 anti-seizure and autoimmune medications every day. This has not improved Luci’s condition and even though she has not lost all learning ability, her mom (my cousin Jennifer) has told me little Luci has unfortunately lost much of who she once was due to nearly two years of steroids.

On her 6th birthday, Luci a neurological surgery called a Stereoelectroencephalograpy (SEEG) which implanted electrodes on her brain to better localize her seizures. As if that wasn’t enough, her parents have also had to make the incredibly difficult decision for their baby girl to undergo a right-sided hemispherectomy. This will happen on January 30th, and the entire right side of Luci’s brain will be removed.

The procedure will take place in Danville, where Luci is expected to recover for about a week before being transported for 5-6 weeks of rehab in Allentown. There she will have to learn to talk, walk, eat, write, etc. all over again. Her recovery will be a long and difficult one, but this girl is a warrior!

Luci’s parents have no choice but to continue working during all of this, as the bills still need to get paid. They will trade off and on, taking turns staying with Luci, working, and being home to care for their 3 older children - Logan, Leah, and Lily. I can’t even fathom what they’re about to go through.

Luci’s family has been through so much already, and it’s going to get harder before it gets better. There will be medical bills, travel and meal expenses, regular household bills, and much more to worry about as they go through this process. Please consider helping Jennifer and Brian, Luci's incredibly loving and determined mommy and daddy, as they continue to support their family though these trying times! They, and I, would be forever grateful.

Thank you. ❤️ #teamluci