Featured in Chicago News segment: https://wgntv.com/news/chicago-news/girl-who-was-told-she-would-not-live-longer-than-a-year-celebrates-5th-birthday/
Alice is a 4 year-old girl who was born with Congenital Central Hypoventilation Syndrome (CCHS), a rare lifelong and life-threatening disorder. Her story is really striking because she has been a fighter since Day 1. CCHS affects the central and autonomic nervous system which in turn disregulates the ability to sense oxygen and carbon dioxide in the blood amongst many other things requiring lifelong ventilator support to assist with breathing. Alice is still however a curious and energetic 4 year old, she goes to school and loves to get her nails painted. Fortunately with todays technology there is a device called a “Diaphragmatic pacemaker” which can be implanted in her diaphragm and help her breathe, no longer requiring a huge 40 point ventilator. This would massively improve Alice’s quality of life, allowing her to become much more mobile and walk freely without being connected to the ventilator. There have been many studies on children with CCHS who have had this life changing procedure and her family desires it for her as well. However, insurance is unable to cover procedure because she is stable on the ventilator (a much less costly option). Please join us in helping Alice live life off the ventilator and donate!