as Many of you are aware our beautiful boy Riain had a rare genetic condition called Hurler Syndrome. Riain had a bone marrow transplant in August to try and eradicate this disease. This went well. Unfortunately Riain spiked a temperature at home and had to go to our local hospital before being transferred back to great Ormand street hospital with a blocked Hickman line in October. Riain picked up pneumonia and was taken into Picu after 4 weeks and then ventilated in the hope to give him a chance to rest to recover. Sadly Riain got extremely poorly and wasn’t able to recover. so we need to give him the best send off possible. this is not something we had ever thought about so we was not able to save or plan. We thought our beautiful boy would recover and be with us.