Kennedy Krieger Institute

TURNING HOPE INTO ACTION

In April 2023, Shawntell’s world changed when her son, Ayden, experienced a catatonic seizure at eight years old while on vacation in Utah. Shortly after, he was placed under the care of Dr. Eric Mallack at Kennedy Krieger Institute, where a team of world-class clinicians would guide him through the treatment of cerebral adrenoleukodystrophy (cALD), a rare and terminal disease affecting the brain.

“Adrenoleukodystrophy is a very challenging and uncertain disease,” Shawntell explains. “But the care we receive at Kennedy Krieger is phenomenal. We are able to live each day with hope, surrounded by the best doctors, facilities, and a true sense of family.”

Ayden’s personality shines as brightly as his spirit. “He impacts everyone he meets,” Shawntell says. “He’s bubbly, happy, jokey, and full of love. Despite knowing his condition and possible prognosis, he chooses to live joyfully every single day. His joy gives me strength and reminds me to embrace life fully.”

RESEARCH DRIVING POSSIBILITY

Research has been a lifeline for Ayden. With Kennedy Krieger’s guidance, he gained access to Leriglitazone through compassionate use—a promising drug still under study—which has slowed the progression of his disease, preserving his vision, hearing, mobility, and mental sharpness. “Research is critical,” Shawntell says. “It dictates the trajectory of his disease. Without it, we wouldn’t have these tools or hope.”

Dr. Mallack and the Institute’s team collaborate worldwide to ensure families like Ayden’s can access cutting-edge treatments. Every therapy session, every milestone, is powered by science and expertise, giving children the chance to thrive despite a rare disease.

With your support, Kennedy Krieger can continue advancing research, providing specialized care, and giving children like Ayden the gift of living fully every single day.

Donate today and help turn hope into action.

• Kennedy Krieger offers more than 90 interdisciplinary programs, inpatient and day hospitals, community programs, and more.

• In 2024, Kennedy Krieger helped nearly 31,000 patients and students benefit from its interdisciplinary care and schools.

• Approximately 500 students from 15 regional school systems attend Kennedy Krieger’s five special education schools.

• Kennedy Krieger’s researchers are developing new treatments and therapies for a range of diagnoses, from common disorders to rare genetic diseases.

• The Institute is home to the Bennett Blazers, an adaptive sports program that serves kids with different abilities from Maryland, Virginia, Pennsylvania, and Washington, D.C.