Background

CLN2 disease is an ultra-rare and rapidly progressing pediatric brain disorder and one of the most common forms of neuronal ceroid lipofuscinosis, a group of inherited disorders collectively known as Batten disease. Children with CLN2 disease produce deficient levels of the enzyme TPP1 . Without enough of this enzyme, children are unable to dispose of all the wastes normally metabolized in their cell’s lysosomes. The wastes accumulate in organs, particularly the brain and retina, contributing to the loss of cognitive, motor and visual functions.

Solution

Following the Noah’s Journey (with consent from his family) from birth to his passing. We wanted to raise awareness of CLN2 and the effects it causes on the patient and family. Where better than a congress full of healthcare professionals. This was the most emotional journey for me personally and I wanted to make sure his story was heard.