The story of Rui

Rui was born on 20th of February 2022 with severe jaundice, enlarged spleen and enlarged liver.

We spent 20 days on the special care baby unit, during which time, his results gradually got worse and worse but he defied all odds and showed no sign of struggling or being ill at all

Fast forward to being 13 weeks and 3 days old, multiple hospital admissions both close to home and miles away, twice weekly check ups, 3 biopsy’s and more blood tests than I can count we got the diagnosis of Congenital Dyserythropoietic Anemia 1a.

We are unsure of what the future holds for Rui, right now he is dependant on blood transfusions every 3-6 weeks, and there’s a possibility of needing a bone marrow transplant in the near future. However, he is fighting fit and is the happiest baby boy in the world and we’re all so proud of him.