Hi, my name is Eirini. I am Hector’s mum. Hector is six years old and has XLA disease. Hector had his first ear infection at the age of six months. We spent Christmas Day in the A&E department.
From then on, Hector suffered regular ear infections.
We visited the GP and the A&E department multiple times but got nowhere. Hector then got pneumonia. We felt helpless. He was prescribed mild antibiotics, which seemed to work for a while, but very soon another chest infection came.
We visited a paediatrician; extensive blood tests were carried out. The blood tests revealed Hector had exceptionally low Ig levels, so we were referred to a private immunologist. He diagnosed XLA disease.
Finally, there was a reason why Hector was poorly so often. It made sense. On the other hand, we knew XLA is a serious disease with no cure. It was a lot to take in. As a mum, I felt guilty because, unbeknown to me, I was a carrier of this disease.
XLA disease has had an impact on our mental health. Prior to the diagnosis, we kept blaming ourselves every time Hector got ill. As a parent, it is a constant worry and stress. The disease has also had an impact on our social life and work. We had to take time off work for hospital visits and stays. We missed birthdays, parties and holidays. Employing a nanny is expensive, but we felt it really made a difference for us.
Hector is being cared for by the doctors and nurses at GOSH, who are wonderful. We have a great routine. My husband and I were trained to give Hector his Ig transfusions at home. This has brought valuable independence. Hector has subcutaneous transfusions every two weeks. We use this time to relax and watch movies together. We are also more prepared. We always have antibacterial gels/wipes with us when we leave the house, and we have a great handwashing routine. As a family, we have far fewer colds now.
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