Eight-year-old stricken with rare genetic disease causing tumors


On a sunny day in Trimble Park, the sound of an 8-year-old boy could be heard playing with his two siblings.
Ian Freeman piled a mountain of sand in the sandbox, was chased by his siblings on the slide and pleaded with his mother, Beth Morgan, to push him high off the ground on a swing.
Ian played like any normal 8-year-old.
But for the past two years, Ian has been anything but normal. Ian was diagnosed with tuberous sclerosis complex, type 1, in February 2011. This rare genetic disorder causes seizures and behavior problems as well as other multiple medical conditions.
Presently, Ian has six tumors. Three of those are in his brain, called subependymal giant cell astrocytomas, or SEGAs, and are believed to be the cause of his seizures. Another two tumors are on his kidneys, called angiomyolipomas, and the final tumor, a rhabdomyoma, is in his heart. These could cause further medical complications in the future.
At it’s worst, tuberous sclerosis complex, or TSC, brought on 18 seizures in one day for Ian. A summer in and out of the hospital undergoing tests revealed one thing: Ian will continue to suffer seizures and behavioral problems that are uncontrollable.
According to the Tuberous Sclerosis Alliance, TSC is a genetic disorder that causes nonmalignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.
The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers.  The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins.
In Ian’s case, TSC has been very aggressive, Morgan said. In two years’ time, Ian has become severely cognitive impaired, grading out at 1 percent on a scale of 100. He is also lacking in communication, grading at a 50 percent level on verbal communication and a 1 percent on non-verbal communication.
That means Ian has a very difficult time processing information, Morgan said.
Like so many children diagnosed with TSC, Ian’s changing behavior was being mistaken for something akin to growing pains.
“He was not listening and was exhibiting some bad behavior. We thought he was being a normal 6-year-old,” Morgan said.
But what Ian was experiencing was anything but normal.
“We found that he had some pretty severe issues, some that could be lifelong issues,” Morgan said.
Daily life for Ian, Morgan and the rest of the family has been stressful. Ian has been spending six hours each day hospitalized at Clara’s House on the CentraCare Campus on the northwest side of St. Cloud. Morgan has been making two daily trips to St. Cloud, which has also put a financial strain on the family, she said.
With the start of the new school year, the Milaca School District was slated to provide for Ian’s transportation to the Clara House, because it is at Clara House that Ian is also receiving his schooling.
There could be some big changes in the lives of Ian and his family in the days and weeks ahead.
Morgan is hopeful that Ian will be accepted into a special trial study through Boston University that is studying a new drug and its affects on the neurocognitive health and seizure frequency in people with TSC ages 6-21. That study will involve nine treatments: three locally and six at the medical center in Boston.