Patient and family stories
Neurological diseases profoundly touch the lives of both the patients they affect and the people who love and support them. Find inspiration in the unique stories of these families, and learn how the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital is offering new hope.
The Autism Center and COVID-19: Our Parents Are Our Superheroes
COVID-19 has completely changed the way Dr. Mirjana Maletic-Savatic—a physician-scientist who conducts cutting-edge research at the Jan and Dan Duncan Neurological Research Institute and treats patients with autism spectrum disorder (ASD) at Texas Children’s Autism Center—practices both science and medicine. But one thing hasn’t changed, and that’s her commitment to her patients and their families. “These are difficult times for everyone with children, but the pandemic really puts extraordinary pressure on families of children with health challenges and special needs,” she says.
Finding the right diagnosis for one child can help millions more
By the time Collette was four months old, she had failed to reach major developmental milestones and was starting to show symptoms that were increasingly worrisome to her parents and doctors. She could not roll over, had difficulty swallowing and holding her head up, and did not cry. Over the next several months, her concerned parents consulted numerous specialists who performed a battery of tests; none resulted in any answers, leaving her family feeling helpless and frustrated.
Leo the Superhero
Leo was a happy and healthy child. He reached his developmental milestones, walking and babbling during his first year. However, after the age of two, things began to change. Leo became increasingly unsteady until he could no longer walk or run. His parents consulted a multitude of specialists—even traveling to Japan—but after many tests, there was still no diagnosis.
The Wilsey Family
When Matt Wilsey daughter’s Grace was diagnosed with a very rare disease, NGLY1 deficiency, he travelled the world to get a diverse group of researchers to work on finding answers. He deployed his experience as a Silicon Valley entrepreneur and advisor to integrate patients, prominent researchers and clinicians to find a cure for this disease. In a recent interview to RARECast, a weekly podcast series hosted by Global GenesTM, a leading non-profit organization that advocates the needs of patients suffering from rare diseases, he describes his personal journey starting from the time his daughter received the diagnosis of a NGLY1 deficiency to how he has brought together a global community of NGLY1 researchers, advocates and patient families.
The Sanchez Family
When they saw how bravely their little son Alex dealt with his seizures, the Sanchez family gave him a nickname: "Little Warrior."
The Kemp Family
Jasmine began life as a normal baby – happy, active, and engaged. But by the time she reached toddlerhood, she'd retreated to a place her mother and father couldn't reach.
The Green Family
Nicholas' perpetually cheerful nature was, ironically, a sign that helped doctors unlock the mystery behind his severe seizures.