Stefan

In the early hours of Saturday 13 October our beautiful friend Stefan passed away in a Dublin hospital. He was 16 years old. We will never forget him. Stefan touched everyone he met. He had his bone marrow transplant 6 weeks after Jesse and at first did really well. It was hard for Stefan and his mum, Caroline, as they were far away from their friends and family in Ireland but they always had time for a laugh and a joke. They endured 7 long months on Robin ward, battling at first with CMV and then adenovirus. I spent many hours in the tiny parent’s room on Fox/Robin ward with Caroline sharing a bottle of wine. We got to know each other well and found out about each others lives and families. Caroline was a great strength to me in my darkest days in Great Ormond Street, her irreverent humour had me in stitches.

Stefan had been ill for four years with Common Variable Immunodeficiency, but still managed to get to school when he could. He was a bright boy and had a way with the girls. He was very popular, his friends adored him. He was very kind to Jesse. When we left GOS, we always would go back to visit them on clinic days. Stefan was so sweet with Jesse, he would chat with him for hours, I have no idea what they talked about! One day in July Caroline and Stefan looked after Jesse while I went to a forum meeting at GOS. They took him back to their room at the Russell Hotel (paid for by the Irish government) and Stefan and Jesse had a pillow fight. Jess had a great time!

Stefan just couldn't beat adenovirus; so GOS gave him T cells from his dad, Mitko. From then on one thing after another went wrong, he developed GVHD in August, then his marrow just stopped working and his counts plummeted. In September the doctors sent him home, he was very homesick. I think they hope it would give him the boost he needed. But within days he was in intensive care, he had a blood infection then pneumonia...

We still can't take it in and will never forget him. Jesse is very sad. Stefan's face was so beautiful; when he smiled it was like a light shining. Caroline and Mitko fought so hard for him, they are heartbroken. They have wonderful friends and neighbours, whom I met at Stefan's funeral, so I know they will be well looked after, but it is very hard for them.

Stefan's funeral was amazing. I went with Tamara, mother of Dylan, who passed on in July. It was emotional and exhausting but I am so glad we went. We flew to Dublin on Monday evening; the funeral was the next morning. The church was packed; there were literally hundreds and hundreds of people of all ages. The gallery was full, as was the annexe and there were many more outside who simply couldn’t get through the door. They had closed his school for the day, his friends were distraught. I will never forget their young faces. Stefan’s head teacher talked about Stefan, describing a brave, bright and talented student who would love to chat and socialize, especially with the girls. When she finished the whole church erupted in applause.

Stefan, we are so glad to have known you and will always remember you.

Claudia and Jesse
xx