Born November 1, 2010, Bryleigh Shullanberger was born a happy and healthy baby girl. Adored by her parents and her big brother, Brixton, she was known for her beauty, the big bows in her hair, and her love for Alvin and the Chipmunks! As Bryleigh neared her 2nd birthday and still wasn't walking, Kaprice & Corbin Shullanberger (Bryleigh's parents), began working with doctors to determine what might be the cause of the delay. After many months of medical appointments, tests, scans, and even a major surgery, a diagnosis of Metachromatic Luekodystrophy (MLD) was made. To read more about MLD, click here.
Inspired by Bryleigh's strength and the outpouring of love & support the Shullanbergers recieved following the MLD diagnosis, the family started The Believing for Bryleigh Foundation, a 501(C) 3 organization that promotes Leukodystrophy awareness and research as well as provides financial assistance to families throughout the USA living with MLD and other Leukodystrophies.
Since 2013, Bryleigh has moved mountains. Her foundation has raised more than $1.5 million dollars and has helped countless families and other non-profit organizations that support those affected by Leukodystrophies. To learn about how the impact The Believing for Bryleigh Foundation is having, click here.
"And though she be but little, she is fierce." - Shakespear
WHAT IS MLD?
Metachromatic leukodystrophy (MLD) is a genetic disorder that affects nerves, muscles, behavior, and other organs, and it slowly gets worse over time. In the late infantile form, which is the most common form of MLD (50-60%), affected children begin having difficulty walking after the first year of life, usually at 15–24 months.
Symptoms include muscle wasting and weakness, muscle rigidity, developmental delays, progressive loss of vision leading to blindness, convulsions, impaired swallowing, paralysis and dementia. Children may become comatose. Untreated, most children with this form of MLD die by age 5, often much sooner.
There is currently no treatment or cure for MLD. Late infantile patients displaying symptoms receive treatment limited to pain and symptom management.