UPDATE: This article has been updated.

Upon first glance, Georgie Merusi looks like any other 4-year-old. He enjoys things that other 4-year-olds like, like catching frogs with his dad and sister and racing his RC car around the yard. Georgie, however, is not really like other 4-year-olds.

Georgie has a rare genetic disorder called tuberous sclerosis complex (TSC), a disease that causes non-cancerous tumors to grow on all vital organs in the body. Georgie has tumors in his brain that cause daily seizures.

Lindsay Greene, Georgie’s mom, said, “It’s a very rare genetic disorder. There’s only about 50 thousand cases in the US, less than a million worldwide … It’s either inherited or it’s spontaneous. Usually it’s spontaneous, and in the case of Georgie, it’s spontaneous.” Greene explained that when a child is diagnosed, the parents are tested. In the case of Greene and her husband, George Merusi, they both did not have TSC.

Greene further explained a bit of Georgie’s story. She said that they did not get a diagnosis until he was almost 2 years old. When he was about 6 months old, Greene and Merusi noticed some strange movement in his arms. The first hospital that the family visited dismissed Georgie’s symptoms and sent them home.

“About a year later, they got worse. We were away for the summer, he started falling down, losing consciousness, and we went to an emergency room at a children’s hospital in Michigan,” Greene explained. There, the staff witnessed Georgie have a seizure and they took him for an MRI. The staff told Greene that they found tumors in Georgie’s brain that are consistent with tuberous sclerosis complex, TSC. The staff sent Greene straight to TSC Alliance, an organization that is working to find a cure for TSC and improve the lives of those affected by it.

Greene said that TSC does not look the same for every person living with it. About 90% of people living with TSC deal with some sort of “tuberous sclerosis associated neuropsychiatric disorders,” or TAND. Some of these can be autism, ADD, ADHD, OCD, or anxiety.

Georgie has had a hard time fitting in with his classmates in preschool as a result of his TSC. His big sister, Edie, was not happy to hear this and told her mom she would have to go down to his preschool and explain, “It’s not Georgie, it’s his brain.” Georgie’s seizures are from his right frontal temporal lobe, the area of the brain that is responsible for attention, communication, and impulse control, which Greene noted are things that are “already hard for a 4-year-old.”

Georgie is a possible candidate for brain surgery — something not all TSC patients are eligible for. Georgie will be going to Boston Children’s in May, where there is a TSC clinic, for a five-day observation.

Reaching Out To The Community

On May 16, the Greene-Merusi family will be heading out to Cadigan Park in Brookfield for the annual Step Forward to Cure TSC. About 15 families who are all affected by TSC will attend the event.

“As a mom, you want to be able to help your kid, and there’s just nothing I can do. And so, I feel like the only thing that felt good and forward progress for me was to put on an event where we bring families with TSC together to meet and connect and network and celebrate their kids and how strong they are,” Greene said.

Sign-ups are at 11 am, with the walk beginning at noon. This event is not just for adults, however; there will be so many activities for the whole family to enjoy. Greene said businesses have been pouring out their support with donations for raffle prizes. There will be thousands of dollars’ worth of products and services available in both a raffle and silent auction.

Keystone Club of Boys & Girls Club of Ridgefield will be putting on games for children to play. On top of the lawn games, there are also going to be arts and crafts and a “glam station,” equipped with face painting, glitter tattoos, and hair tinsel.

“[Boys & Girls Club was] so excited to do this for us. They’re just going to show up and turn it into a kids’ activity day,” Greene said. Brookfield Volunteer Fire Company will also be attending with a fire truck for families to see. For those who want to help, go to give.tscalliance.org/georgie for more information about the event and to donate.

Edie wants readers to know that “if he does something wrong … his brain didn’t grow right.” Greene added to that, reminding readers that there is a lot that Georgie has to deal with.

Greene told The Newtown Bee, “He works hard every single day in ways that we’ll never see or understand just to operate in this world … He has seizures all night. Sometimes he doesn’t sleep. He’s on heavy hitter seizure meds … What would you do if it was your child?”

=====

Reporter Sam Cross can be reached at sam@thebee.com.