Joe

A special boy that fought to the end

Joe was born 4 weeks early by emergency c-section on the 19th of October 2013. I had a feeling all during pregnancy that something wasn't quite right he had fluid in his stomach in my scans this fluid then disappeared I am now aware that this is a marker for several genetic conditions. Joe spent his first 5 months in and out of hospital with several chest infections. He didn't feed well and although he was smiling and laughing he wasn't hitting milestones. At 4 months at one of his several hospital appointments I begged a doctor to find out what was wrong with my baby. We where admitted and spent the next 4 weeks in hospital where Joe was in very poor condition. We where eventually given the diagnosis of gm1 infantile type no cure no treatment and we where told to count our sons life in weeks. Joe had other ideas he spent the next 10 months laughing smiling and being an absolute joy to have in our lives. He never rolled or sat unaided but he enjoyed life so much. He never lost his sight or his hearing or his beautiful smile. During those 10 months we spent a lot of time in hospital and nearly lost him on a few occasions. We then took him back to hospital on the 20th of January 2015. After a wonderful Christmas and celebrating his 1st birthday. On the 23rd of January he took a turn for the worse my little boy had had enough and he grew his angel wings lying in my arms at 20.55. We miss him so much but he really was a very special boy.







Last Updated: April 2015