Baby Geno, was born April 27, 2017. He is very special. In fact, he is literally one in a million! Since birth Geno has struggled with a rare and severe lymphatic disorder, multiple congenital heart defects, pulmonary hypertension, bilateral hydrocele, pyloric stenosis, difficulty eating, etc. Geno has been in the intensive care units at Munson, University of Michigan and Children’s Hospital of Philadelphia for 12 of the 16 months of his life (he is currently doing very well at home).
Geno has infantile Pompe Disease. This means at almost one and a half, Geno can’t yet sit up on his own or walk. The weekly 8 hour infusions that he receives have shrunk his heart to a normal size and have strengthened his muscles somewhat. We are praying hard that new developments in gene therapy will heal his muscle weakness, breathing issues and other debilitating issues to enable him to eat by mouth, crawl, walk, and breath without oxygen one day soon!
He is so happy and has brought joy to all of those around him, despite all he has been through! The Pompe Foundation of Northern Michigan was founded to help children like Geno and their families. Their needs are great, but our collective will is greater.