Greyson Bloomberg, 9 months, with his mother, Emma Johnson of Struthers who need a seizure monitor since Greyson has tuberous sclerous complex which causes tumors to grow on major organs,

WARREN — An Easter-themed fundraiser organized by a Warren woman will help a 9-month old Struthers boy who needs a seizure monitor for health issues he is battling.

Danella Monsman of Warren is planning an Egg My Yard fundraiser for Easter with money raised to help Greyson Bloomberg of Struthers.

“I learned what Greyson’s medical needs were,” she said.

Emma Johnson of Struthers, Greyson’s mom, said her son has tuberous sclerosis complex (TSC), which causes tumors to grow on major organs.

She said it was found that Greyson has several large masses on his heart and two large ones tested positive for TSC.

The family has taken Greyson to the Cleveland Clinic to be tested. Johnson said the condition was detected by tests before Greyson was born.

“He is currently on medication that shrinks tumors that are on his brain and heart. He is on anti-seizure medication. He can have a seizure while he is sleeping, and that is why we need a seizure monitor,” Johnson sad.

She said the seizure monitor will help track seizure activity while Greyson is sleeping that can be reported to his doctor to show how many seizures he is having.

The monitor also will enable Greyson’s parents to check on him to make sure he is breathing properly. Johnson said she is in a support group for TSC and the seizure monitor was mentioned by a person there.

“They told me a seizure monitor has helped them a lot,” Johnson said.

She said Greyson has had infantile spasms and twitching that also can be tracked by the monitor.

Cost for the seizure monitor is between $1,200 and $1,500 and is not covered by insurance.

She said both she and Greyson’s father, Jeffrey Bloomberg, have taken time off work to go to Cincinnati every six weeks to be checked for seizure activities and also to the Cleveland Clinic where his heart is checked.

“We are lucky to have a lot of family support. There are family members who can watch him during the day while I am at work. My parents and Jeff’s grandparents are able to help,” Johnson said.

She said regular baby monitors don’t record everything that a seizure monitor records and the information can be sent to the neurologist, who can let the family know whether to come to the hospital immediately or not.

“He has some tumors that won’t shrink at all. He does have two tumors that potentially can grow and cause blockage. The medicine is helping to prevent some from growing or shrinks them,” Johnson said.

She said in three months, Greyson will be checked to determine the size the tumors.

“I hope that I am able to bring awareness to this disease. With more awareness, it will help with more research and getting more treatment options,” Johnson said.

She said some adults have had the disease since they were children.

“There is a mom I have been talking to for a few months who has led me to specialists and other people for eye checks for Greyson,” Johnson said.

Because Greyson is so young, the family watches him all the time to make sure he is OK.

Monsman said the group that hosts the fundraising became a nonprofit last year. She has hosted the fundraiser for the past four years. In 2021, it helped her family get a wheelchair van for their daughter, Krista. In 2022, funds helped the family get a wheelchair ramp at their home. In 2023, funds helped a Girard family get a wheelchair van for their daughter.

“Each year, we look for a recipient for the funds raised from Egg My Yard. We check and see what they need and what may be covered by insurance. We select based on where the greatest need is,” Monsman said.

Monsman said the Egg My Yard will continue through Easter, and then other fundraising is being planned. She said they are discussing a fundraiser for Mother’s Day and an event in late summer with live bands.

Johnson said she feels the Egg my Yard is a great fundraiser to help families.

“There is a misconception about individuals, no matter what age, with a developmental disability or any disability, Not every disability is visible. You don’t always know what someone is going through medically,” Monsman said.

She said she will help Johnson find what seizure monitor will be the best for Greyson

“We will get Greyson what he needs,” she said

Have an interesting story? Email Bob Coupland at bcoupland@tribtoday.com.