An infection that made Rhys Birnie-Parker’s family feel rough for a few days put him on the brink of having a blood transfusion.
Rhys, nine, has the rare blood condition hereditary spherocytosis which meant a virus which gave the rest of the family respiratory problems attacked his spleen so he was in West Suffolk Hospital for four days last week.
But the stay has made the family, from Malvern Road, Bury St Edmunds, realise how little is generally known about the condition, which affects about one in 5,000, and his mum Shelley Birnie now wants to raise awareness.
Shelley said: “I’m a nurse so I’m up to speed medically with a lot of things but there were lots of things connected with this I didn’t know about.
“If I didn’t know, what position were other people in? I was shocked how little is known and the trauma these kids have to go through.”
Rhys was born with the condition which his father, cousins, uncle and paternal grandmother also have, though his sister does not.
Consultant Haematologist Noémi Roy of the charity Congenital Anaemia Network (CAN) explained: “HS is a rare genetic condition whereby the red blood cells of patients take on an abnormal shape and are destroyed by the spleen. As a consequence, instead of surviving three months in the bloodstream, these cells survive only a few weeks.
“Patients get tired and can have jaundice. Some require blood transfusions and some patients need surgery to remove their spleen.”
Shelley said: “A year or so ago, Rhys started to experience ‘mini crises’ – this is where he gets pain in the spleen area which lasts around half an hour.”
But the latest admission was far more serious.
Shelley said: “He was given five bags of fluid, IV paracetamol and IV anti sickness. His haemoglobin level kept dropping, leaving him anaemic.”
He could not replace blood cells quickly enough and it was feared he would need a blood transfusion, but his body responded in time.
Shelley praised the West Suffolk Hospital staff who cared for him, working with the haematology team at Addenbrooke’s Hospital, Cambridge, who have now begun regular reviews of him.
She has explained the condition to staff at Horringer Court School, who are supporting Rhys with a phased return to school.
“They have been amazing,” Shelley said.
She will now work with the CAN, which aims to boost knowledge of all hereditary anaemias and supports sufferers with information and financial help.
To find out more about anaemic conditions visit CAN’s website at www.togetherwecan.uk