Ethan

Ethan is the sweetest little boy with a very docile demeanor. He loves going to school and works hard at his therapies. He enjoys documentaries and books on animals! He is always requesting bears. Ethan also enjoys spending time with family, especially exploring museums and the outdoors! He’s quite the tree hugger.
~Stephanie, Ethan’s Mom

MPS1 Hurler Syndrome

Hurler syndrome is the most severe form of mucopolysaccharidosis type 1 (MPS1), a rare lysosomal storage disease, characterized by skeletal abnormalities, cognitive impairment, heart disease, respiratory problems, enlarged liver and spleen, characteristic facies, and reduced life expectancy. Patients present within the first year of life with musculoskeletal alterations including short stature, dysostosis multiplex, thoracic-lumbar kyphosis, progressive coarsening of the facial features, cardiomyopathy, and valvular abnormalities, neurosensorial hearing loss, enlarged tonsils and adenoids, and nasal secretion.

Artist: Sheefali Asija