Roswell Mom Finds Purpose in Daughter's Illness

Reiko Donato doesn’t think of herself as a hero. 

In fact, she didn’t even really want to discuss the concept.  She was too focused on explaining some of the latest advances happening right now in TSC research.

Tuberous Sclerosis Complex—also known as TSC—is a genetic disorder that affects approximately 50,000 people in the United States and over a million people world-wide.  The disorder most commonly causes tumors to form in the brain, kidneys, heart, eyes, skin, and lungs. 

Reiko is careful to point out that TSC is also the most common alleged genetic cause for autism and epilepsy—conditions she’s very familiar with because they affect her 12 year old daughter, Alex. 

Alex was diagnosed with TSC just three days shy of her first birthday.  “Alex started having seizures at seven months old.  She’d really had less severe ones earlier than that, but we were first time parents and the pediatrician said it was normal baby behavior, so we had no idea these were seizure episodes.  But at seven months, she had a seizure that sent us to the ER.”

The hospital referred the Donatos to a neurologist for an EEG—a type of test that measures and records the electrical activity in your brain.  “It took over a month to get in to see the neurologist.  We were fortunate that this doctor was already familiar with TSC.  He noticed this particular white spot on Alex’s leg that she’d had forever and even before seeing the abnormal EEG, he had an idea that TSC might be the issue.”

When all the testing was complete, the Donatos were informed that Alex has two tumors in her heart, one tumor in her right eye, skin lesions and a brain tumor.  “It was overwhelming at first, but my background is in marketing research, so I immediately began to look for everything I could find about TSC.”

Reiko’s ability to grasp complex subjects quickly was a blessing for her daughter.  11 years ago, TSC wasn’t a condition many pediatricians were aware of and Reiko quickly realized that if Alex was going to receive the best care possible, Reiko would have to become a strong advocate for her daughter. 

“Although the tumors don’t have to be life threatening, they have to be monitored regularly to make sure they don’t become life threatening.  Alex has had to have annual brain, kidney and heart exams as well as visits to the neurologists every four months.  When she was diagnosed, there weren’t area coordinators to help parents with that or to even work between specialists.  I had to become that coordinator for my daughter,” she said.

What’s fascinating is that Reiko’s advocacy didn’t just extend to her daughter’s care. 

Over time, Reiko became a source of support and information for other parents who found themselves struggling with a new TSC diagnosis.  First, she became involved with several online community groups, funneling new research information about TSC, autism and epilepsy to other parents.  Then she became involved with the nonprofit agency TS Alliance, where in the past three years, she’s chaired the annual Atlanta Step Forward to Cure TSC walkathon.  The Atlanta walkathon has raised over $700,000 in the last eight years, funds that have led to great advances in TSC research.

She was also a key player in the creation of the new “Atlanta Tuberous Sclerosis Multidisciplinary Clinic without Walls” at Children’s Healthcare of Atlanta, where parents can receive assistance in coordinating the different specialist and testing appointments needed for their children.

Reiko doesn’t see any of this as heroic.  “I became involved because it was a positive way I could contribute rather than feel helpless. And I’m happy that my contributions can, in some way, help other families on this journey.

“Eleven years ago, we had no idea that there might be drugs available within Alex’s lifetime that could have positive effects on her condition. Yet here she is taking a drug (Affinitor) that has caused tumors in her kidney to shrink. And researchers have discovered mutations on two specific genes cause the disorder. Continued research may not just help Alex, but also offer hope for autism, cancer and diabetes.  I’m happy to be able to support those endeavors.”

You can find out more about Tuberous Sclerosis by visiting the TS Alliance website.  The Atlanta Step Forward to Cure TSC walkathon will be held May 14th at Gerrard Landing Park in Roswell.  Contact Reiko Donato at (678) 296-9464 for more information or visit FirstGiving to donate.