Amalia

Hi everyone! I am sharing here the link to my parent's fundraising campaign for the French non-profit organization dedicated to Ondine's Syndrome (AFSO), which is working to find a cure for my youngest brother's condition. Ondine's Syndrome, also known as Central Congenital Hypoventilation Syndrome (CCHS), is an extremely rare genetic disorder affecting only 5000 patients worldwide. The main symptom is their inability to breathe autonomously during sleep. My brother has a tracheotomy, (hole in the trachea), and must be connected to a respirator at night to stay alive. All funds go to research. Please donate or share this link, it is thanks to each of your contributions that we hope to someday allow my brother to live without any medical device.Thank you for your support!