My son was diagnosed with a rare genetic anemia called Pyruvate Kinase Deficiency at 10 months old. He was in and out of hospital requiring emergency blood transfusions until he was 16 months old. He was then put on regular blood transfusions every 4 weeks. In January 2022 he had a port-a-cath inserted as he was very difficult to cannulate due to his condition and sometimes it took up to 10 times to get a cannula in, which as you can imagine is extremely distressing for him.

My goal is to raise as much awareness as possible as we found that as this condition is very rare there is not a lot of support or many people in the area with the same condition. I feel that because it is so rare that nursery's and schools etc aren't aware of the condition, the symptoms or issues related to it.

Tracey Rushbrook