Three-year-old Reef Carneson was five months old when he was diagnosed with acute lymphoblastic leukaemia. He had a bone marrow transplant and for a while things looked good – until he developed a severe form of graft-versus-host disease (GVHD).
Today Reef is tiny, weighing 9,4 kg – just a kilo more than his eight-month-old sister, Payten.
His skin is red and raw from inflammation and stretched so tight his hands are permanently balled into fists. He can’t sweat or produce tears, suffers from frequent seizures, can’t walk without help and can say only one word: mama.
YOU’s Gilda Narsimdas met his parents, Ryan and Lydia Carneson, who are packing up and moving to Los Angeles so little Reef can receive treatment they hope will cure him and give him a window into something that sounds like a pipe dream to them – a normal life.
Read more in YOU 20 October 2011.
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