Connecticut advocacy took part in the highly successful “Little Heart Hero” day, which was attended by children with CCHD and their families.
One of the tables that the children and their parents toured was the “You’re the Cure” table, where kids drew pictures on petitions asking the Commissioner of Connecticut's Department of Public Health to adopt regulatory guidelines ensuring CCHD Newborn Screening is performed by using the Pulse Oximeter(Pulse Ox) test.
Charlie, born with bicuspid aortic stenosis, micronagthia, along with a number of other life threatening health issues, drew a picture of himself without his wheelchair. He was one of 28 children who drew heartwarming and inspirational images on their petitions, while 20 parents and friends signed the Pulse Ox Screening petition cards.
Pulse Ox testing is a method that is both inexpensive, non-invasive, and supported by the American Heart Association, The American Academy of Pediatrics, and the Department of Health and Human Services.
These petitions are schedule to be hand delivered by advocacy volunteers to the Commissioner’s office.
that''s my baby boy Charlie.....most positive outlook in life.....that''s him very full of faith and spirit.