Softball League Seeking New Players

MANCHESTER – Manchester Senior Softball League is looking for softball players who would be interested in joining the league for the 2023 season to play Recrea- tional Softball. Games are played Monday and Wednesday mornings, May through August. For additional information contact Fred Bohinski @ 848-261-1884.

Journey: Continued From Page 31 epilepsy that can cause developmental delays and other health problems. Its resistance to anti-seizure drugs is one of the key characteristics of the disease. The diagnosis finally explained why none of the medications given to James could halt his seizures.

“After the doctors determined the diagnosis, they knew there was an old medication that would help James,” Kristy shared. “He was the second one to try it, and the seizures started to dissipate.” Kristy said she preferred not to release the name of the medication and added that the drug could have a potential adverse side effect on the heart.

Researchers believe that KCNT1 mutations caused James to experience malignant migrating partial seizures of infancy. James began showing evidence that he was developmentally delayed as a result at a young age. For example, he did not reach for toys or meet typical milestones as he grew older.

At 8 years old, James is non-verbal and unable to walk. A school bus takes him to the Lehmann School in Lakewood, where he has both therapies and learns at a slower pace.

“They work on seeing if he can make eye contact in a field of two,” said Kristy, “And maybe look for a letter or listen to songs. He’s got aides who just help him along. The school also gives James some socialization.”

When he’s around his family, there’s no doubt that James is particularly happy. He has an infectious giggle, almost instantly triggered when his little brother makes silly noises. Jackson, age 6, took his mom by surprise when he opened up about James. Usually somewhat reserved, Jackson admitted he liked pushing his brother’s stroller and enjoyed pulling pranks on the nurses who sometimes visit.

“He takes James in stride,” Kristy shared. “Jackson is really the sweetest thing to him, and I can tell James really likes it when he’s with his brother.”

The Salkewicz family has two dogs, a black lab named Indy and a yellow lab named Duck, who eagerly await James’ return home from school so they can give him kisses. However, James is not fond of the dogs licking his face after he eats and will make a fuss.

Kristy said daily prayer is a critical part of her life and remembers asking God to stop the seizures. Watching her son’s little body become tired was difficult as the episodes came one after the other.

“They still kept coming,” said Kristy. “It was so frustrating.”

A chance encounter with a random stranger changed Kristy’s way of thinking. A store clerk said his grandfather told him that no matter how bad you think you have it, somebody else always has it worse.

Kristy swears the young man was put on her path to deliver a message, one that didn’t make sense at the time. Her prayers changed to expressing gratitude for the things she could. For example, James can breathe on his own, and he can eat – both things everyone takes for granted.

“There are only about 200 children known to have KCNT1 epilepsy,” said Kristy. “There’s more and more getting diagnosed because genetic testing is key. They couldn’t find out what it was without it, and the testing is helping to target treatment.”

The KCNT1 Epilepsy Foundation supports parents who may feel alone in finding resources. According to Kristy, the Foundation is also trying to raise awareness and donations for drug research and development.

“I am doing as much as I can to participate in all the surveys they (the Foundation) provide,” Kristy shared. “They’ve been looking for blood samples, so we’re working on getting blood to them from James.”

James also participated in a year-long natural history study, which required Kristy to document seizure activity and sleep. The family has also participated in interviews with a doctor and a psychologist and donated James’ saliva in conjunction with a study in Chicago.

“I felt like I was not helping enough at first because I was so used to doing this on my own,” said Kristy. “Now there are these people who want to get the word out – and we’re not the only ones anymore.”