Benefit planned for Austintown baby with tuberous sclerosis

Benefit planned for Austintown baby with tuberous sclerosis

By Susan Tebben

stebben@vindy.com

AUSTINTOWN

Jamie and Joe Perry were excited to find out they were having a baby boy in April 2012. Joe and the family were ready for the only male grandchild, with dreams of all the new experiences they’d have.

Joe “had a baseball mitt in the delivery room,” Jamie said. “He said ‘I know we won’t need this for a while but I wanted to bring it.”

And for months after Cayden was born, it was a normal childhood, with a protective 4-year-old sister named Brynna and a large extended family welcoming him to his new life. His first word, which made Jamie tear up, was “mom.”

Jamie – and her pediatricians – thought she was just a worrying mother when she couldn’t figure out what was wrong after Cayden cried for nearly a week straight and white spots appeared on his skin.

“Then I started noticing he would tense his arms and his eyes would get really big,” Jamie said.

After it happened multiple times, the parents decided to take Cayden to Akron Children’s Hospital in Boardman. After the doctors noticed the white patches on Cayden’s skin, he was transported to the main hospital.

“We had this perfect, normal kid, and it got taken away from me,” Jamie said.

It was discovered that Cayden, now nine months old, had tuberous sclerosis, which occurs in one in every 6,000 children. One million people in the world are known to have TS, approximately 50,000 of whom are in the United States, according to the Tuberous Sclerosis Alliance.

The disease can cause many other medical problems, including seizures, which Cayden had been having.

A benefit is planned for the family on March 9. Here are details:

What: A spaghetti dinner, auction and raffle, to benefit for Cayden Perry

When: March 9, 3 p.m.

Where: The Eagles Fraternal Order 3298, 1655 S Raccoon Road, Austintown

Donations will be accepted.