Our son Eliot was diagnosed with DMD in May 2013. He turned two in November. Although we are at the start of a long and difficult journey, we are well aware of the clinical research that is being undertaken around the world to combat this disease. We hope that something similar to the Lung Cancer Master Protocol for Clinical Trials can be established for Duchenne, in order to speed delivery of treatments to all boys. Without this coordination alongside accelerated approvals we fear that these treatments will be unavailable for this generation of boys.
Even though Eliot is still very young, we hope that he is lucky enough not to experience the full effects of this life-robbing disease. It is difficult to fully express an insider's point of view of life with DMD - the right words are often hard to find which explain the complexity and contradictions that present themselves in almost every moment. We have chosen to illustrate our thoughts instead and we hope others see something they understand. Please refer attached.
Andrew Lilleyman & Caroline Hickey Perth, Western Australia