Saturdays guests part 2

27 August 2012 02:07
Blake and his family

Society Community Director Jacqui Robertson met with Paul, Jenny and Blake to hear their story and what follows is a from the heart letter from Jenny and Paul.  We appreciate how hard this must have been but both Jenny and Paul want to get Blake's message across to highlight what is a rare and relatively unknown condition in the hope that research can be improved both by donations and understanding."Blake James McMillan arrived on 21.3.12.  Weighing in at 6lb2oz he was tiny, compared to his big sister Faye who was 7lb15, but he was very cute!  We first realised that something was wrong at 24 hours when he got his paediatric review. There were a few wee things that were not quite right about him, so the consultant came in to give a second opinion.  Within minutes he was taken to special care, and we were left in shock. The midwives had already started planning our discharge and we could not believe this was happening.We were allowed to see Blake an hour later, and he had a nasogastric feeding tube in situ and he was sleeping. They said they wanted to run some tests, and he would be in for a few days. I was left in a side room in the ward, and eventually, after what seemed like weeks, but only days, I was moved through to be with him.After various tests and scans, we were allowed home, and were to wait for the results. We were unable to just enjoy the newborn stage, with a huge question mark looming over our lives. We were terrified as to what could be wrong with our beautiful little baby, but as the days went by, we began to believe that he was going to be just fine. However, our darkest day arrived! We went back up to Ninewells to see the consultant, to receive the results of his genetic tests