By Susan Tebben
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 Mahoning Valley 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 9 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.
Many cases go undiagnosed because of the relative obscurity of the disease and the mild form symptoms can take, according to the TSA.
The disease is a genetic disorder that is either inherited or a spontaneous genetic mutation, which can cause tumors in the brain, eyes, heart, kidney, skin and lungs. The tumors are usually noncancerous, but depending on the location can cause other problems.
Doctor’s found four tumors in Cayden’s head and one tumor in his heart.
“Nobody knew what it was,” Jamie said. “Before the doctors and the clinic in Cincinnati, nobody knew what to tell us.”
On top of the tumors, Cayden was found to have polycystic kidney disease, something that occurs in 2 percent of those diagnosed with TS. He is currently on four medications to combat the symptoms of the disease for which there is no cure.
“I just said, ‘How did my child get this?’” Jamie said.
Because it’s a genetic disorder, the Perrys won’t know if they are carriers until they have DNA testing.
But for now, Cayden is being seen at a tuberous sclerosis clinic in Cincinnati and is scheduled, days before his first birthday, to have brain surgery at New York University.
Travel and health care costs for the family are daunting for the family, but the family wouldn’t think twice.
“It’s a small price to pay if he can have something of a normal life,” Jamie said. “You don’t think about all the small costs, but we’ll do what we have to do.”
Family members have arranged a benefit March 9 to help the Perrys pay for the costs of taking Cayden to New York.
After all they have endured in Cayden’s first year of life, though, the Perrys just want to see more awareness for the disease so others will know.
“The younger they catch this, the better,” Jamie said. “It’s a cruel, cruel disease.”