The story of Adam and Lea
Around one year ago we were diagnosed with a rare disease – Sanfilippo syndrome – in age of just 2 years (Adam) and 7 months (Lea). Currently there is no cure to this fatal illness but we hope that the progress in research will save our lives before it is too late. We suffer from hearing loss, speech delay and metabolic issues but Sanfilippo is a progressive neurodegenerative disorder and the list will get longer over time. Therefore, in the race against time, our parents, together with other families from all over the world, give their best to fund research to find a cure for Sanfilippo.
Nonetheless we love to play, we enjoy every single day and make memories as we are expected to die young.
Learn more about us and how to support our fight on:
www.adamlea.eu
www.sanfilippo.org.pl
www.sanfilippoinitiative.org
Care for Rare
Connect with other families living with Sanfilippo Syndrome – RareConnect.org