Rayana was diagnosed with Pieere Robin Sequence and Congenital Disorders of glycosylation type 1q (CDG type 1q) and is only one of 12 cases in the entire world that we know of. The 2 conditions combined caused Rayana to have multi system disorders from neurological, eyes, heart, metabolic, GI issues and she is now hypoglycemic. Rayana is strictly tube fed only . We are raising money for Rayana to get any medical supplies that she requires now and in the future. Our main goal is to purchase a Sat- monitor that will measure her heart rate and oxygen levels through out the day and night which can cost us up to $3000.00. Rayana has had many struggles and just as many triumphs in her short little life including 8 life changing surgeries, she will be turning 2 on August 25,2014 and would love to have this machine as apart of her birthday celebration! Thanks in advance to all that can help.
The Smaily Family