I thought I might introduce myself first, My name is Maeve, I am from Cornwall. My brother is having a Bone Marrow Transplant because he has XLP,HLH which has affected him really bad. He used to be a really energetic boy but now he is not himself, sometimes it feels like we have lost him in the deepest, darkest woods and we can never find him. But he is a fighter and he can do it! He has had 4 siezures which were very bad his 3rd seizure we were told he had only 48hours to make an improvment but he did it and he is still with us. The doctors in Cornwall thought it was glandular fever but obvisiouly not, I do hope that peoplpe from Cornwall make sure that the doctors have diagnosed the children properly because you don't want to end up like my family. When I am older I am going to try and rise awareness for XLP screening fo women. Only women can carry XLP, if you are XLP positive that means that your son will have a 50/50 chance that he might have it. If he does and he dosen't get diagnosed with XLP he might not live up to his 10th birthday. I hope this helps greatly. I am here to talk to anyone who needs advice because I have been there and I was just a scared and confused as you might be but together we can stay strong. Love Maeve xxx
