I followed these families for years and was thinking about Shelbie this morning and googled to see if there was any info as the last programme was in 2016 I think. Sadly it seems she died on Saturday, after reaching her 19th birthday which is totally amazing considering the prognosis her mum was given. She was able to get to Disneyland so lived life in the fullest way right until the end.
The google search showed that Shelbie has been mentioned all over the world in journals and articles, she really touched the lives of so many.
RIP Shelbie and thoughts and love for her family, who were totally amazing and her voice throughout her whole journey 