From the time our youngest son (Archie) was born in 2003, through until early childhood we ‘as parents’ had always noticed something odd about our sons skin complexion/weakness. We visited the doctors many times, and Archie was treated for iron deficiency, nothing more was ever done, usual blood tests was taken, but never did it concern anyone. Over time we felt neurotic parents, but never gave up.

In September 2010 Archie became very ill and required hospital admission on several occasions in quick succession for a number of weeks.

Since this time he has required blood transfusions every 3 weeks. Archie was diagnosed in December 2011 with Congenital Sideroblastic Anemia, this is an extremely rare blood disorder which effects the bone marrow. Whilst diagnosis has taken so long, I’m content he’s now in good hands. As well as having regular blood transfusions, Archie also requires iron chelation to remove the excess iron from within his body, this excess iron is produced through the life saving blood transfusions. To accomplish this, Archie has to be connected to an syringe driver for 10 hours, 5 nights a week. To manage all of the above Archie spends a huge amount of his time in hospital.