Evelyn is 11. When she broke out in a rash in November 2014, her GP requested a blood test. 6 weeks later, after numerous blood tests and 2 bone marrow biopsies, she was diagnosed with Severe Aplastic Anaemia. This means that her bone marrow doesn’t produce enough blood cells for her body, and she has very low levels of all 3 types of blood cells – red blood cells which carry oxygen, white blood cells which fight infection and platelets which control bleeding.
In March, she had surgery to insert a port, and started immuno-suppressant therapy to treat her anaemia. Evelyn has had numerous platelet and red cell transfusions this year, to reduce her risk of life-threatening bleeds and improve the symptoms of tiredness and shortness of breath.
Unfortunately 4 months into treatment Evelyn suffered a stroke on the right side of her brain, and just 9 days later, she suffered a second stroke on her left side. Multiple MRIs showed that the strokes were caused by vasculitis, and Evelyn was immediately put on steroids – but none of her doctors know what caused the vasculitis. It continues to progress on the right side of her brain, and while she currently has no new infarcts, the risk of another stroke remains a possibility.
Evelyn has just begun receiving chemotherapy again, and will undergo a PET scan and brain biopsy as doctors from oncology, neurology, rheumatology and infectious diseases all try to understand her condition.
She has been in hospital for over 50 days so far, including 29 days in ICU – many of those on a ventilator. She has fought every step of the way, and although she has a long road to recovery she’s still as determined as ever.
Evelyn loves soccer, arts and crafts, Lego, astronomy, Dr Who, How To Train Your Dragon, Minions, and music by 2cellos.