Against all odds

Secaucus boy struggles with incurable disease

Tristian Smith is a brave seven-year-old.
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Tristian Smith is a brave seven-year-old.

At seven years old, Tristian Smith has tumors on his brain, heart, and kidneys. The medications he takes could cause him to go blind.

He’s had two brain surgeries. May 29 was the one-year anniversary of one of them. Doctors removed 15 to 20 tumors; they had to leave his brain exposed for 13 days. They didn’t get all of them. Tristian still has 33 tumors on his brain. Before surgery he had 59.

It took Tristian a year to get cleared for surgery because the disease affected the brain. After the surgery last year, there were unanswered questions. An MRI in April detected a large tumor growing on his brain. If it gets larger, doctors will have to drain the fluid.

Tristian suffers from Tuberous sclerosis complex (TSC), a genetic disorder characterized by the growth of numerous noncancerous tumors in many parts of the body.

These tumors can occur on the skin, brain, kidneys, and other organs, in some cases leading to significant health issues. TSC also causes developmental problems. The signs and symptoms vary from person to person.

For life

While the disease can hit at various stages of life,  the patient lives with the condition the rest of his or her life. Though not cancerous, the tumors can create other serious complications.

TSC frequently affects the brain, causing seizures, behavioral problems such as hyperactivity and aggression, and intellectual disabilities or learning problems.

According to national statistics, at least two children born each day will have TSC. There are about one million victims worldwide, 50,000 of whom live in the United States.

Many cases may remain undiagnosed for years or decades due to the relative obscurity of the disease and the mild symptoms some people experience.

“When he got taken off one medication for one night, he had 70 seizures,” Tristian’s mother, Tracey Jackson, said. “We didn’t expect that to happen.”

Jackson is a single parent with two sons, Taaj and Tristian. She said she was sent home from the hospital with a newborn and without support services. While no one knew it was TSC at the time, everybody knew something was wrong. “He had seizures every day,” Jackson said. She would watch her baby seize and not know why.

She didn’t know what he had until he was four years old. Tristan was hospitalized every year.

Full-time caregiver

Though Tristian has had the disease since birth, he wasn’t able to get a nurse until he was five. Jackson became Tristan’s provider, giving up a directorship in New York City.

Tristian has 20 hours a day nursing. He goes through an intensive regimen of physical and speech therapy and counseling.

“He’s been through a lot for a seven year old,” Jackson said. “But he never complains about anything.”

When Jackson first discovered that Tristian had this disease, she didn’t want anybody to know about it. “The mayor knew a little bit, but he didn’t know how bad,” she said.

Friends and others encouraged Jackson to come forward with the boy’s story in order to raise awareness. Secaucus Mayor Michael Gonnelli and the city council passed a resolution to honor Tristian’s courage and to help the family’s efforts to make the public aware of the disease. The Secaucus Board of Education also honored Tristan and the family.

Hoping for a cure

Now Tristian and his mother are on a mission to make the community aware, and by raising awareness help find a cure. “This is a journey of advocacy and awareness,” Jackson said.

Tristan is like every other kid, wanting to do things, but hampered by his condition. He loves swimming, but he can’t play sports. He loves math, watching TV, and many other things kids his age like.

Tristian missed his first year of school. He was briefly home schooled. He currently attends Clarendon School, where he has one to one help from a para professional  and other services.

“He’s a great kid, an awesome kid,” Jackson said. “In the midst of all of it, he has the courage to beat the odds. That’s what we’re doing, beating the odds.”

For updates on this and other stories check hudsonreporter.com and follow us on Twitter @hudson_reporter. Al Sullivan can be reached at asullivan@hudsonreporter.com