The Kennedy family had plans for Christmas and were looking forward to it, especially the little Cleo who now should wait for what the few next days will hold for her request to get the miracle drug treatment from Boston-based drug company Vertex.
The 3-year-old girl suffers from a specific genetic mutation causing cystic fibrosis. She was prescribed Orkambi in September, approved for use by kids in the US.
Her father's insurance provider refused to pay for the $272,00-a-year treatment, and her mother's won't begin covering Cleo until Jan. 1. And in this situation, the family can't afford the $20,000-plus to buy Orkambi.
Vertex, that offers supplies of pharmaceuticals to some kids, rejected on Friday a request to help Cleo, claiming she didn't meet the criteria without further details.